Tidings of Comfort and Joy

Happy Holidays, sweet friends and readers. I am picking up our story from my own laptop, after turning this little blog over to Jim, who shared his journey with Lyme Disease throughout the month of November.  One of the reasons Jim offered to write his own lyme “biography” is to reiterate what we have experienced in our own home, now three times over: every Lyme story has a different plot. Jim’s story resonated with so many Lyme sufferers, he almost broke the blogosphere. (A bit of hyperbole, but Word Press kept sending us kudos like “Boom!” and “Bam!: and “Way to Go!” which felt way better than it should have).

pills.pngAfter suffering for two years with an unknown enemy, the relief of a diagnosis gave Jim the energy to forge ahead with aggressive treatment. And within 20 MINUTES of swallowing the first handful of pills, the fog began to lift and Jim could again think and process information without the feeling of being in a tunnel. (If you’ve ever passed out, and on the way down noted that everyone’s voices were getting muffled and farther away…THAT’S how Jim described the Lyme brain fog.)  But he also 25994917_1643213659101154_3887435746114689873_nimmediately began to experience the downside of treatment, the side effects he had been warned about. Hindsight only offers the confirmation that we should have been — and needed to be — better prepared for what his regimen would entail. We could have put some buffers in place and asked for more help. We could have shored up the weak spots so we weren’t blindsided by what was to come.

So this is where I resume the story.  During the fall of 2016, armed with new treatment plans, Jim and I poured our energy into building a company and enjoying the bright spot that was our youngest’s last year of high school. We knew that our bandwidth for crisis was pretty thin, minuscule actually. But it also never occurred to us that Lyme would continue its march through our family. And because it’s so difficult to understand what’s happening when you’re in the middle of it, I now see that maybe the blessing of Jim and I “going first” was the gift of showing our kids that Lyme can be fought, and that seemingly unrelated symptoms can be (and often are) part of a systemic problem. That you aren’t crazy or lazy or burned out or a hypochondriac because you get sick every three weeks. And when this is all said and done, I think we will all agree that having Jim and I “go first” in our Lyme story was really the best scenario.

KillI may now be grateful for the benefit of hindsight, but I’m even more grateful that we couldn’t peer around the corner into 2017. Day by day, and sometimes even hour by hour, was about all we could take. We had waded so far into the hell of Lyme treatment that we were unable to stop and ask for help. By the time I was able to surface and breathe and assess where we were, it was hard to even articulate what we needed. What we needed was a do-over, a time out, or a pause button, because the hits just kept coming.

Even now, one year later, relief washes over me when I think about where we were last year. I was in the middle of a time-consuming and experimental new treatment, Jim had begun an even more aggressive and unpredictable regimen, and a third diagnosis was cooking and looming. And THAT ONE absolutely wrecked us, leaving us stunned and changed and temporarily wounded. Friends and family were bewildered by what we couldn’t articulate…that three of us were sick and stressed and we didn’t have time to “do it right.”  I have leaned in for many families dealing with cancer and divorce and hospice and other unspeakable tragedies. I have trained caregivers and given countless talks about “the ring theory of care and how to walk into the mess that comes with illness and the emotional effects of treatment. So many asked “how can we help” or “just let us know what we can do” and some were offended that we didn’t. But we couldn’t — that  whole frontal lobe thing that enables someone to parcel and process and triage was frozen in crisis, because we DID NOT HAVE TIME to think about what we needed.

Jim and I have shared the highs and lows of parenting together. We were the keepers of tradition and family jokes and, while far from perfect, we tried to at least set an example with a shared love that guided our “ship.” But both of us were sick with the same disease, and affected in very different ways, and it appeared that one of our kids was being thrown into those waters as well.

So yes…this time last year I was frantic and frenetic, and I cried. Every. Single. Time. I left the house. And all I could think to do was wipe my face and walk back into it and do my best, which was often NOT.

As it has all along, this story will tumble out haphazardly, and only with permission. But I’ll give you a glimpse of where we are now. Because out of our little circle of six, half of us have been sick, and all of us are somehow scarred. But I will keep writing because every time we “put it out there” someone else raises a hand to ask a question about Lyme, and that redeems our mess even more. I have a pile of books that keep me going, and lately Anne Lamott has best reflected my scattered thoughts. 

“You are going to feel like hell if you never write the stuff that is tugging on the sleeves in your heart — your stories, visions, memories, songs: your truth, your version of things, in your voice. That is really all you have to offer us, and it’s why you were born…”

After Jim and I watched Dylan cross the stage at high school graduation this past June, we looked at each other and realized that we no longer had a reason to stay in the DC area. As our nest emptied, we had the option to live where we wanted. We were finally well enough that we decided to stop running our firm as the “in between” option as we 

Light1sought to land more permanent positions. We decided to stop waiting for things to happen FOR us and instead to make things happen BECAUSE OF us. We assessed our resources like the crew trying to land the Apollo 13 and decided that  7 Marcom was going to represent the best we had to offer. We wanted the freedom to help companies tell their stories and guide clients to FIND their stories. We wanted to run a firm with humor and integrity and excellence, and do it in a location that feeds our souls and inspires great stories.

I read recently that you know you’re finally in the right “flow” when things keep happening that confirm your “hunch” or your new direction. Some call it coincidence…others name it grace. Both spark a swell of gratitude that floods you with the courage to keep stepping forward.

We put the home we loved on the market and sold it after one SHOWING. Not one day, one showing. For more than we listed. That same day, through another one of “those coincidences” we found a home close to Charlottesville. At the base of a mountain, right next to a lake, in a neighborhood that looks and feels like Maine.

Tidings.PNGOur new life is not rosy and perfect.  The lapses in blog posts usually represent a battle yet untold. We’re still shell-shocked, but we are also doing better overall (There’s that word “brutiful” again — our life is at times both brutal and beautiful). But we have the time and space to heal and deal with the wreckage of the past two years. Our new business is thriving….and I am proud that it DOES represent the best of us. We are working together, loving each other, and beating back the disease that still tries to threaten our future.  And as I’ve said before, we’re doing it. Maybe part of  “doing it” means admitting out loud that Lyme tore through this family like a storm we never saw coming. But it also uncovered strength that we never knew we had. The past year taught me to cling to what I name faith, knowing no one was out to get us, but that God was weeping with us, rooting for us, and giving us the courage to hold on, because something better was coming. 

“It would help to begin by admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” ~ Anne Lamott

More of our story will tumble out in a few days, but for now…enjoy the rest of your holiday. Stay warm, and hydrated, and please take Uber. And as “Saint Anne” says,

God Bless You All Good.

 

 

 

 

 


Jim’s Story – Part 4: The Lyme Stigma

physicalI had my annual physical this week. We recently moved to a new area, so it was a new doctor, obviously unfamiliar with my medical history, so I came equipped with my story and my experience with Lyme Disease. For what it’s worth, I liked the doctor a lot and he’ll be “my guy” moving forward. That is, for everything other than for Lyme Disease.

This doctor, like so many other doctors and others with whom I’ve engaged over the past three years, doesn’t seem to “buy into” the concept of chronic Lyme Disease.

The physical began, as these things usually do, going over my vital statistics. As mentioned in a previous post because vigorous exercise is a great way to detox during Lyme treatment, I have been exercising like a maniac over the past year. Beyond detoxification, there have been other positive effects of the exercise. My weight is down considerably and, with it, my blood pressure and cholesterol (OK, there’s part of me that’s just bragging right now).

Unfortunately, the exercise has done nothing to cure my bald head (there, how’s that for corresponding humility?)

doc.jpgWhen the doctor asked what else we needed to talk about, I took about five minutes to talk about my Lyme diagnosis and where I am in my treatment. The doctor asked not a single follow-up question about it. Within a few minutes we were back to talk of LDL/HDL, diet and exercise, and college basketball.

Again, I’m taking nothing away from this doctor because in all other ways, he seemed completely awesome (I took some exception to his insistence that it was time for a colonoscopy, but I don’t consider him to be a sadist or anything).

The doctor’s seeming indifference or lack of curiosity about my Lyme came as no surprise.

lymedocMy previous general practitioner, whom I also consider to be awesome, often said this: “When I hear hoof steps out the window, my first thought is ‘horse,’ not ‘zebra.’” What he meant by that was that his first thought is to seek the answer that makes the most sense. That effectively was his rationale for he and his colleagues swinging and missing on my Lyme diagnosis for two full years.

That is why, when I arrived to that practice with acid reflux and neck pain, they recommended Prilosec and Advil. When I arrived with the terrifying symptoms of hypoglycemia, they suggested smaller, more frequent meals. When I came to them with brain fog and word-recall issues, they checked my records and chalked it up to a Vitamin B-12 deficiency. And when I came to them with excruciating pain in my feet and shoulder, they diagnosed it as gout, this despite the fact that my uric acid levels were normal.

When I put it all together and suggested that Lyme Disease might be the culprit, they ordered the standard test that never would come back positive for someone with “chronic Lyme.” So they shook their heads – “No, you don’t have Lyme Disease.”

westernAnd, finally, when I came back to them with the results from what is called a “Western Blot test” that showed I was positive for Lyme, they finally acquiesced. My Lyme diagnosis now met the criteria for Lyme established by the Center for Disease Control.

If convincing doctors is that tough, “believe me” when I tell you that explaining Lyme to friends and family is even more difficult, partially because it is difficult to describe, especially while under the effects of brain fog. It’s also difficult for others to imagine and understand how much havoc Lyme can wreak. Eyes start to glaze over if you begin listing problems ranging from brain fog to sore feet. Invoking the CDC during a family-dinner conversation will not generate understanding. The next sentence is more likely to be, “Pass the carrots,” than “Oh, the CDC, now I understand what you’ve been going through.”

And I think I understand. Before three members of my own family were afflicted, I knew precious little about Lyme. It seemed like the “go-to” malady of the week for the hypochondriac set. “Guess what old Aunt Myrtle’s says she’s got this time? Apparently, she’s got that Lyme thing!”

lyme spellingIf you have cancer, that’s readily understood. If you have a broken leg, hey, there’s the cast – how could you doubt it? If you have pneumonia – “oh, pneumonia!” – people can identify with THAT.

But Lyme Disease?What is that? That must be all in Jimmy’s head.” Putting aside the fact that Lyme actually WAS “in my head,” I can tell you that the stigma associated with “chronic Lyme” makes it something that I, at first, didn’t want to tell anyone. Once I did, the judgment I’d anticipated would accompany the diagnosis was palpable.

I found this passage from “Psychology Today” that provides a relevant perspective:

Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.”

Just have a positive attitude and it will all go away.

lyme2That’s how I felt when the symptoms I described were dismissed by doctors and by many others. Just last week, when I met with my “Lyme doctor” and I told her that I would be having the aforementioned physical the next week with my G.P., she suggested that I be purposely vague about my Lyme treatment. This was something I was unwilling to do, but seeing my new doctor’s indifference to what I was describing, well, it was both familiar and understandable.

And I want to emphasize that point a third time: I understand why people don’t understand. This isn’t to point fingers or seek sympathy. I’m speaking directly to the people with Lyme and who have the symptoms of undiagnosed Lyme. Many of your friends and family will NOT understand. Just this week, after reading my first blog post about Lyme, a family member emailed me and asked “Why did you keep this to yourself?” I presented two or three examples of when we had talked about it and (I think) the light blinked on.

It is that general lack of awareness and the corresponding stigma that contributes to the proliferation of Lyme Disease. There’s not one single, tell-tale symptom. Lyme will masquerade as one or many other things. And the general misunderstanding, the perception by many that it’s not “real,” and the associated label of hypochondriac or “perpetual victim” that accompanies it, well, that hurts. As you’re beginning your ascent out of what can be a deep hole, negative perceptions and doubt of those around you make you feel that much more isolated and hopeless during a time when you need support the most.

lymeBut that can’t stop you from seeking diagnosis and treatment. Because chronic Lyme will NOT go away without sustained treatment. Find the right doctor. Look for the right types of support groups. Find trusted resources that will lead you to the right diagnosis and the right treatment. It’s really tough. And, don’t expect that those around you are suddenly going to sprout the ability to listen, comprehend, or respond.

This is particularly true because, if your experience is like mine, you first told people you had several other things wrong with you. “I have arthritis.” “I have acid reflux.” “I have gout.” “I have meningitis.” “Oh … wait … I don’t have any of those things; I have Lyme.”

You’re the boy who cried wolf. You’re Chicken Little. You’re Darth Vader. OK, maybe you’re not Darth Vader … but C3PO, yeah that fits. C3PO was an incessant worrywart. So, you have to think about people looking at you like Han Solo looked at 3PO during the Empire Strikes Back. When 3PO was screaming about everything that was wrong on the Millennium Falcon, Han Solo’s response was to scream: “Shut him up or shut him down.”

So, maybe, my whole point is just this. Figure out who the R2D2 is in your life and talk to him.