Baseline
The Hopkins lab has seventeen vials of my blood. So much that after drawing the first nine vials the woman in the lab had me leave for an hour, drink a gallon of water, and then come back and sit with a heating pad on my arm until she could find a vein that was still good when she tapped it. I’ve also had my saliva swabbed for three days straight so that we can assess my cortisol levels. The results, when Rowland-Seymour calls me one night to go over them, are a little more disturbing than I might have liked.
One aside here: I have found, over the years, that when a physician calls you after five o’clock at night it is generally never sensational news.
I know that I often have less than pretty blood work. I know some of it is troubling. My hematologist has looked at my blood cells under a high-powered microscope, which reveals that my red blood cells are larger than normal. In addition, some of my white blood cells, known as neutrophils, contain discolored dohle bodies, which are very rare and indicate some type of chronic inflammation. He even had my three older brothers send him blood samples to see whether mine represented some kind of genetic mutation within our family. It didn’t. It’s just me.
And I have known for some time that starting about fifteen years ago—the furthest back that we have records for it—my white blood cell count, or WBC, has been quite low. The average WBC ranges between five and ten thousand. Mine has ranged from one thousand (when I was paralyzed) to a little over three thousand. This is not great because white blood cells fight infection. That means that when I have a cold, it doesn’t last a week. It lasts a month.
“Right now your white blood cell count is 2,500,” Rowland-Seymour says. “Your absolute number of lymphocytes, or the total white blood cells counted, should be between 120 and 300. Yours is 20.”
Meanwhile my red blood cells are being pumped out of my bone marrow too fast, and are a little too big, which tells her that my bone marrow is working extra hard to make them.
“Your mononuclear cell count is high,” she says. “Normal is between two and eleven. Yours is over fifteen.” She pauses. “This tells us that you’re responding to a chronic disorder of some sort.”
My iron count is a little low as well—and I’m not storing iron well. My iron levels should be between fifty and seventy and mine are twenty. My ferritin level—which measures how well my red blood cells are storing iron—should be between ten and three hundred. Mine is four.
My complement factor is also quite low. This matters a lot. Complement factors—called C3 and C4—“complement” the work of antibodies in destroying foreign invaders. “They act like a kind of glue, allowing our fighter white blood cells to stick to abnormal proteins so they can annihilate them,” Rowland-Seymour explains. “When you’re fighting some kind of foreign invader nonstop, your complement levels go down—because all the complement factor, or glue, is being used up as your white blood cells adhere to the bad abnormal invader cells and try to eliminate them.”
I think about this for a minute. “So, my army is running out of the regular supplies it needs to do its job on a continual basis?”
“Well, in a sense, that’s right.”
My salivary cortisol levels are high. Very high. Salivary cortisol measures how much stress a person is having in the here and now. Normal range is between 0.04 and 0.56. My levels, taken on two different days, are 0.73 and 0.95. Off the charts. “Salivary cortisol levels in this range tell us that you are currently feeling an acute level of stress right here, right now,” she says.
Another stress marker, IL-6, which measures our inflammatory cytokines—the chemicals that whip up the body into an autoimmune or inflammatory response—is not as elevated as we might have expected. Mine is 0.44, moderately high. But another similar cytokine level, IL-2—also used to measure cytokine activity and inflammatory processes—tells a different story. Thirty-eight and up is elevated. Mine is thirty-eight. So my IL-2 cytokines are circulating heavily. They tell us that I’m experiencing chronic, long-term stress.
A negative floating brain of neurochemicals is coursing through my body on a regular basis.
My antinuclear antibody (ANA) count, which looks at antibodies that are turning against the body itself and harming one’s own tissues, is slightly positive. It’s not high, but any ANA count at all can point to an autoimmune process. Mine is forty and what they call “slightly speckled.” But I don’t need to worry that it speaks to lupus or mixed connective tissue disease . . . my numbers are below that threshold.
What’s going on with me is something else entirely.
“And, so,” I say, a little dumbfounded, “what do you think all this points to?”
She clears her throat, taking a minute before she speaks. “What I believe these peculiarities mean is that there is some ongoing, chronic autoimmune process taking place that is causing your bone marrow to produce cells less efficiently than it otherwise would,” Rowland-Seymour says. “But what that is . . . we have no idea.”
I feel a little flattened at her pronouncement. I’m setting out on this journey to heal my brain and hopefully help my body—but right now I feel as if the mountain is way too steep and jagged for me to climb. How can I pump up my bone marrow in the face of whatever mysterious chronic thing it’s fighting by using modalities as simple as meditation, yoga, acupuncture, and nature walks? Which leads to my next question.
“We have no idea what my bone marrow is fighting?”
She must suspect how I’m feeling. “No,” she says. “What I want you to remember is that despite all this you’re doing . . . okay.”
“I don’t know if ‘okay’ is the right word.” I try to laugh.
She laughs with me. It’s reassuring. “Point taken,” she says. “Let me see you next week and we’ll run a full physical exam in my office, and get a read that way too.”
* * *
NOT SURPRISINGLY, TEN days later when I see her, our list of medical diagnoses is fairly stark:
Vasovagal syncope, a fainting and seizing disorder, treated with a pacemaker.
Small-fiber sensory neuropathy, or an autoimmune disease of the small sensory fibers in the body that help us to feel heat and cold and to manage and hold objects in our hands. (There is no treatment, one just has to live with that dead feeling in one’s hands and feet, and with dropping things left, right, and central.)
Pancytopenia, which refers to those low white and red blood cell counts.
Von Willebrand disease. Lack of sufficient clotting factor in the blood. It is why some women used to die in childbirth, and it’s why at any given time I have small bruises on my body, and why minor surgery for me is never a minor thing. Happily, synthetic hormones work to clot my blood—but they cause other problems, so my hematologist tries to avoid them whenever we can.
Thyroiditis. Solved, more or less, by taking thyroid hormone pills each morning. Though anyone with a thyroid disorder knows I’m making light of this.
Guillain-Barré syndrome, twice, which has left me with nerve damage in my extremities, muscle damage, and spasms that are treated with physical therapy. GBS is why a few days ago a teacup flew out of my hands and landed on my wireless computer keyboard, so that the only letter the keyboard now types is P. It’s why our rescue pup, Ashlie, the corgi-Chihuahua (we think) watches me cook and chop—hoping for scraps—from just outside the kitchen doorway. She knows knives and other small items like garlic presses sail from my hands with no warning and these mysterious flying objects can nail her, scaring her so much she quivers for twenty minutes afterward. It is why I fall over my own feet and hold on to people when I get up from a chair or have to step over something on the ground or walk up and down bleachers at lacrosse games or track meets.
To test my balance, Rowland-Seymour asks me to walk across her exam room with one foot in front of the other in a straight line, as if doing a drunk driving test. I can’t do it. Not even for two steps. She catches me in free fall before I crash, careering sideways, into the exam table.
She also has me walk on my toes in her office, which is hard for me, though I do my best.
The next day I feel the exercise keenly, when both of my calf muscles seize up. If I exert a select set of muscles strenuously it can cause them to turn rock hard and sore. Whenever I complain about this to my neurologist, he reminds me that I don’t have all of the normal nerve connections left in the muscles of my body. When most people use their muscles, they use one set of nerve connections and, when those are spent, they draw on another. But my body has only a limited set of nerve connections to draw upon. When I use them up, that’s that. If I keep on trying to use them, my muscles lock down, quiver—they let me know they are done. There is no second or third set of nerve connections for my muscles to tap into to power up.
There are still so many other things on the symptom list.
Muscle weakness after short exertion—some days just getting up a steep incline in a parking lot makes me feel so spent I can’t walk for one or two minutes. Many would call this chronic fatigue—the feeling, sometimes after simply getting up off the sofa, that every sinew, muscle, blood cell, synapse, and nerve has been usurped by some other force, my own life force stolen away. But for me it may be a matter of nerve damage. Either way I often feel throughout the day that I would feel better lying down.
I also have a long history of bladder spasms and pelvic floor muscle spasms; this requires more physical therapy, exercises, and stretches.
And then there is my back. A few years ago our one-hundred-pound golden retriever pulled me down the front steps in a serpentine twist and I slipped my L3, L4, and L5 disks and injured my sacrum, pelvis, and sacroiliac (SI) joint. I’ve had weekly physical therapy ever since. At last, something normal, Zen joked, trying to make me see the humor in finally having a midlife ailment that others would recognize by name.
Then there are the gastrointestinal issues. After I had GBS the second time, I ended up in the hospital in a gut-related crisis. The gut is full of nerve endings—that’s why we get “butterflies” when we’re nervous or feel fight or flight—and mine were compromised. Things didn’t motor through my gastrointestinal tract as they should, which led to intestinal infections and a year of antibiotics. Now, eating a special whole-foods diet, I wrestle with more minor episodes of what is classically known as irritable bowel syndrome, or IBS. With, in my case, a little nerve damage complicating things. Some days it can be debilitating.
I also have chronic tendonitis in both wrists and hands. Basically my tendons are chronically inflamed. Wearing wrist braces to type helps.
We talk about my history of fevers of unknown origin—for a year or so my temperature would spike up to one hundred degrees for no good reason.
And then there are the skin rashes. A seemingly small thing on the list but one of the things that drives me the craziest. The burning, itching sensation is so constant, irritating, and disruptive it wakes me up through the night. I have eczema on my face all the time. Both eyelids are scaly and red. My chin sometimes swells up like a puffer fish. The skin between my nose and mouth scales off every few days in white flakes. If you walked by me in a crowd you might think I have some rare skin disease. It makes me so self-conscious that sometimes I keep my dark glasses on inside so at least my red, crusty eyelids can’t be seen.
Anyone who has ever had eczema knows what I mean. Sometimes I have it in the crooks of my arms, on my neck, or my hands. It waxes and wanes but never really goes away—especially on my face. My dermatologist once said, “Remember, this is a minor problem compared to everything else you’ve been through.” But it doesn’t feel minor. Scratch, scratch, scratch. And the topical immunomodulator creams used to control the autoimmune process behind eczema cause other immune side effects that my dermatologist doesn’t like, so they are out for me, though I’m told I can use them in advance of special occasions, for one week only, then stop. I have long thought that if all of my autoimmune eczema cleared up, without using creams, it would mean that I was becoming healthy inside. That something enormous and seismic had changed within.
Insomnia. If you’ve ever had it you know what I mean.
Headaches. They come and go.
I fill out an inflammation index with over two hundred questions to help get a sense of what symptoms of inflammation bother me most in the day to day. My numbers come back glaringly high in the following areas: numbness, fatigue, skin rashes, gut issues. My total inflammation score is ninety-six. One hundred is considered severe. Zero to ten is ideal.
I never before looked at my physical conditions altogether like this. I’ve tried not to be so . . . comprehensive.
As diagnoses have stacked up, I’ve adapted to each new condition, accommodated myself to living with a little more numbness, a little more scratching, a degree more of fatigue, and more back pain and bowel issues, accepting the newest ailment or pain quotient into my repertoire, subliminally factoring it into my awareness of what I have to get up and work around each day. After a while, my memory of what I felt like before that newest physical glitch grows foggy.
* * *
IT’S AN ALP to climb, to try to combat all this with state of mind and see if we can get to the other side.
Meanwhile, Rowland-Seymour has it all in my file now—which is suddenly much thicker. Blood work, symptoms, inflammation scale. We have quite enough to use as a point of comparison to reassess where I am in a year versus where I am now.
* * *
WE CHAT FOR a moment about our goals in terms of the practices we will choose for my yearlong experiment. We reiterate our three primary objectives. We will focus on approaches that are (1) supported by current scientific literature and her clinical experience, (2) available to people no matter where they live and without great expense, and (3) gentle enough that most people, even those with limitations, can engage in them.
“Where would you like to start?” Rowland-Seymour asks.
“Meditation,” I say. “The literature on how meditation and mindfulness maximize the healing responses of the brain has been so compelling.” I’m hopeful that they can help me to reverse the negative stress-reactive processes in my brain that have long been set in place. I find myself deeply drawn to the idea of trying to sit and quiet my mind, I explain. I’m hungry to find out what it might be like to even momentarily silence the Pain Channel at will.
“Let’s begin with the inside—the brain—and work our way out to the body,” Rowland-Seymour suggests.
“Yes,” I agree. As we talk, our plan emerges. I will spend the first half of my year—the fall and winter—attempting to alter my PIN response by trying to change my interior mental activity, and the manner in which I respond to life around me, through meditation. My efforts will center on a technique known as mindful breathing—a meditation approach in which we move our attention away from our spinning thoughts, using the breath as an anchor to help calm the mind. I’ll also explore loving-kindness meditation, or compassion meditation.
After I establish a solid practice in mindful breathing and loving-kindness meditation, I’ll spend the second half of my year—the spring and summer—exploring yoga, laughter yoga, exercise in general, and acupuncture, and the role these might play in redirecting our floating brain and PIN response. At the end of my year, I’ll evaluate what tools are working best for me and why.
I decide not to confess to Rowland-Seymour how scared I am that none of this will work on me.
But I think of my children, of how their “normal” is having a mom who lies on the floor at odd times. Of what my illness—the joy thief—has already robbed from them, when their idea of a good childhood is simply that I’m still alive.
I don’t want my Pain Channel to become the childhood pain that keeps them from the Life Channel—now, or twenty years from today. There has to be a better way.