Holding Space & Making Casseroles

FBWJWith half of my professional life spent in parish ministry, I cross paths with people at their best and worst moments. The healthiest communities are those where people can safely share their burdens, and know that their load will be yoked to people who truly want to help. One of the trickier paths to navigate is when EVERYONE wants to help, and while being knee-deep in casseroles is pretty awesome, it can create some awkwardness if the one asking for help is not familiar with the throngs of people offering care.

This is an amazing problem to solve, and is an opportunity to remind one another that 55 casseroles just might be too many…but that there are many other ways to lean in for someone in need. I’ve found it best to sit down with whoever is in this new and  vulnerable position for an honest, confidential, and hopefully empowering conversation. It is crucial to reiterate that the person asking for care does not have to accept help from people they are uncomfortable with, they don’t have to eat food they don’t like, and they don’t have to apologize for anything. I recently walked a team through the process of setting up care for a recently diagnosed colleague and we used a model I have been privileged to use before, creating layers of care to meet the various needs while carefully guarding the privacy of the person in this bewildering season.

Wise friends taught me to ask the care receiver to come up with five people she would be comfortable having around her…the people she could text “help” to and know that they would drop everything.  These are the ones able carry the raw pain that comes with a terrifying diagnosis, creating the first circle of care outside of immediate family. After that, a second “ring” of care can be used up for dog walking, house cleaning, or meal preparation. This ring is filled with people who are typically selfless, generous caregivers who understand that they are meeting a crucial need, but are probably not in daily contact with the care receiver.

Unfortunately, diagnoses don’t typically arise when everything is neat and tidy. They tend to crop up during holidays, vacations, job crises, or family feuds. Fear and pain usually magnify what is already happening within the context of relationships, so perhaps setting aside all expectations is a first step for family and friends.  I often remind caregivers that the care receiver 1) doesn’t have to apologize for how the diagnosis makes others feel and 2) isn’t responsible for the emotional well-being of anyone other than themselves (and their immediate family.)  The need to provide care so quickly can also force some difficult and necessary reminders that “it’s not about you,” or rather…”it’s ONLY about the care receiver.”  And it’s perfectly okay if you cannot hold space this way for someone, no matter the reason, because another need will arise and you will be able to step up at that time. But it’s NOT okay to pour your own concerns, sadness, or even disagreements INTO the circle of care.

ringtheory1.jpgFive years ago, psychologist and breast cancer survivor, Susan Silk (along with her husband, Barry Goldman)  developed a simple technique that offered a simple, visual explanation to help everyone in and out of the “circle of care” understand and maintain healthy boundaries throughout the caregiving relationship.  It can be applied across all tragedies – medical, legal, financial, romantic, and even existential. She named it it “The Ring Theory,” and when the article ran it provided relief for thousands of people.

She tells people to draw a circle that will serve as the center ring and put the “care receiver’s” name inside. Next, draw a larger circle around the first one and write in the name of the person(s) closest to the trauma, and continue circling and naming as many times as you need to, which each larger ring representing the  next closest people. (Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones.) What you end up with is what Susan calls the “Kvetching Order” where you apply the “rules” to the Ring Theory.

Rules, you ask? Yup. But remember…these are Susan’s rules, I didn’t make them up:

  1. The person in the center ring can say anything she wants to anyone, anywhere. She can cry and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
  2. Everyone else can say those things too, but only to people in the outer, larger rings.

Basically, if you are talking to someone in a ring smaller than yours, someone closer to the center of the crisis, the only goal should be to help, and listening is more helpful than talking. But if you’re going to speak, try to remember to ask yourself if what you are about to say is likely to provide comfort or support…and If it isn’t, then just. don’t. say it.

People who are suffering from trauma don’t need advice. They need comfort and support  such as “I’m sorry” or “This must really be horrible” or “Can I bring you a CASSEROLE!!!” and not “You should hear what happened to me” or “Here’s what I would do if I were you.” And PLEASE don’t say, “This is really devastating ME.”

If you need to vent or cry, do it in the opposite direction. Turn away from the inner rings and pour it into any of the outer rings. This has famously become known as “Comfort IN, dump OUT.”

I hope you will never find yourself in the center ring, but I know few people who don’t spend at least some time in the eye of the storm. Comfort in, dump out.

God bless you all good.

 


Further Down the Lyme Road

wristHi friends. I am the queen of false starts…gaining momentum and then pushing this little blog to the side when life gets crazy. Or when I fall and break my wrist and need surgery to screw it back together and am handicapped by one-handed typing and type for a living and can’t bring myself to type during my free time.

But then again, I do have frigging Lyme, which is probably the real reason for my inconsistency.

ANYWAY. This post may be super boring if you don’t have Lyme or you hate posts with lots and lots of links. But I owe you an update.

In July I shared a bit about the detour we were taking with Lyme treatment, going off the beaten path to try new (and alternative) therapy for the illness that has torn through our family. Three months later we can say that we are making progress and gaining confidence that this detour is a permanent route. I threw a lot of information at you in this post,  but I am going to try to offer a simplified explanation of what we have found to be helpful. When we adopted this new protocol, things began to get dramatically better.

We continue to read, research, and interview practitioners as we seek to understand the complicated conundrum that Lyme presents. We were recently in the office of a new, local LLMD (yes, local to Charlottesville!) and she affirmed our recent epiphany that healing is a “mind, body, spirit” endeavor.  The descent into full-blown, chronic Lyme most likely did not happen overnight, and is probably the result of inflammation, diet, genetics, or circumstances. And, of course, ticks. You could have Lyme “simmering” below the surface only to have a virus, tragedy, or vaccination (yep) bring it to a boil. (And we are living proof of all three….one of us crashed after a vaccine, another after an infection, and a third after a difficult transition/season.)

 Important aside –  I am not anti-vax. I am pro-vaccine education. Many of us with Lyme have compromised immune systems and will not tolerate vaccinations as we did prior to the invasion. Our son ended up in the emergency room with cellulitis following a routine vaccine required for college. If we had only known what to expect afterwards. 

joyGetting back to the topic at hand, I want to share a simplified version of what we have done to gain traction with regards to overall healing.  I wish I could report that it was as simple as a medication change, but that is so NOT the case. In fact, we were probably harmed by staying too long within the confines of mainstream medicine and the overuse of antibiotics. What truly helped us turn the corner was the realization that healing requires a whole-life approach. (A mind, body, spirit approach.) I will break this down into concrete steps, but before I do I need to offer the requisite disclaimer: this is not prescriptive. It is highly individualized based on genetic testing, bloodwork, and lots of time with a Lyme practitioner. Do not adopt these thinking they are a panacea for your own battle with Lyme, because it is just that: YOUR battle, but rather an overview of the holistic approach that is finally working for us.

  • First, we underwent genetic testing. Your unique genetic makeup determines how your body tolerates pesticides, mold,  gluten, dairy, medications, detox and more. It is so much easier to make changes when you understand your own genetics. This takes the guesswork out of an already-complicated process. We used Genesight, while others have used 23andMe or DNA Connexions.
  • Next, a consultation with our LLMD helped us map out a new dietary and supplement regimen using the genetic testing to inform our plan, which included:
    • A more alkaline diet to reduce inflammation, organic vegetables and fruit in season (due to pesticide intolerance), pasture raised eggs, chicken or beef, and NO seafood due to higher mercury levels. We also had to eliminate gluten and most dairy. Kale smoothie, anyone?
    • We added supplements of glutathione using Immunocal (denatured whey protein) to make up for the fact that two of us lack the gene that makes glutathione, an antioxidant that supports detoxification and promotes healing. In a non-Lymie person, the body produces and uses glutathione to help detox the liver, and break down foods with gluten and dairy. Lymies who don’t make glutathione need to take OUT the gluten and dairy and add in supplements to replace it. We also added NAC  (N-acetyl L Cysteine) because it plays nicely with the glutathione to promote healing and detox.
    • These changes were combined with supplements we were already taking: D3, Zinc, Vitamin B6 and 12, liposomal vitamin C, and probiotics.
  • We learned as much as we could about the role of detoxing and added in a more robust regimen of epsom salt baths, bentonite clay soaks, infrared sauna, and detox lemonade. We are lucky that a “salt spa” with infrared sauna has opened in our town.
  • We began a very tailored herbal protocol. This is so individualized, and must be done under the watchful eye of a LLMD. There are many herbal protocols in the Lyme world (Vital PlanByron White, Cowden, Buhner, Klinghardt.  to name a few). The herbal therapy has to be done EXACTLY right, at the same time of day, and also requires the above dietary and lifestyle changes in order to be effective. Let me repeat: Do not try this on your own!
  • We embraced meditation. Meditation is gaining respect in the Lyme community for its role in calming the mind, reducing inflammation, sparking the production of serotonin and dopamine, aiding in brain plasticity, reducing emotional lability, helping with sleep, increasing pain tolerance, do I really need to keep going? I’m absolutely NOT KIDDING: some of our greatest leaps in recovery came after sessions of guided meditation.
  • And finally…the spirit part. Lyme is insidious in its assault, with cardiac, neurological, reproductive, hormonal and musculoskeletal repercussions. It can take months, or even years, to arrive at a diagnosis,  there are LOTS of setbacks, healing is hella expensive, and there are no uniform guidelines for treatment. And all of this happens while life marches on. It would be an understatement to say that it’s a spirit-killer, often robbing us of relationships due to isolation and broken commitments and even altering our perception of ourselves. (Now I’m sad.) It takes a dedicated effort to seek joy and to pursue healing, but it is absolutely crucial to the process. It’s also the last thing you feel like doing when you are in a healing crisis. A new Lyme treatment center in town is offering EMDR (Trauma Therapy) as part of the program, because they rarely see Lyme patients who DON’T have PTSD.

anneI doubt I’m alone when I say that I still hold this progress tentatively, afraid that the other shoe is going to drop, or that we will hit a wall and experience more setbacks. I know I need to work on that mindset (yet another theme for therapy) but it’s so easy to lapse into self-preservation mode as we climb out of the pit of chronic illness. We need to stop reading about joy and more actively chase it, we need to exhale and celebrate the progress. More later.

Until we meet again, God bless you all good.

Jenny

When I let go of having it perfect, I learned the joy of sharing life with the imperfect.” 
― Kara Tippetts, The Hardest Peace