The Red-Stained Road to Remission

The Red Road to Remission

In public speeches, on this blog, and in daily life, I’ve spent two years talking about my struggles with pompholyx eczema, a little understood autoimmune disease. As a refresher, here are some basic facts about the mercurial condition, courtesy of DermNet:

“Pompholyx presents as recurrent crops of deep-seated blisters on the palms and soles. They cause intense itch and/or a burning sensation. The blisters peel off and the skin then appears red, dry and has painful fissures (cracks)….

Pompholyx is multifactorial. In many cases it appears to be related to sweating, as flares often occur during hot weather, humid conditions, or following emotional upset. Other contributing factors include:

  • Genetics
  • Contact with irritants such as water, detergents, solvents and friction
  • Association with contact allergy to nickel and other allergens
  • Inflammatory dermatophyte (tinea) infections
  • Adverse reaction to drugs, most often immunoglobulin therapy…

[Additional risks involve] secondary bacterial infection with Staphylococcus aureus and/or Streptococcus pyogenes…results in pain, swelling and pustules on the hands and feet.”

So yes, debilitating, painful and at times, humiliating. I’ve written about society’s tendency to treat another’s visible disfigurement as an acceptable conversation topic. Strangers ask rude, invasive questions – like “What happened to you? Did you get burned?” – that they wouldn’t dream of posing to someone in a wheelchair, for example. And very rarely was I in possession of answers.

The condition typically onsets during young adulthood. I was 34 years old – not a geezer, but past the blush of youth. There’s no pompholyx family history. I’m allergic to nickel as well as a number of medications. But that’s always been so, and reactions stop at vomiting and temporary hives. Also? My case exploded near the Thanksgiving holidays. I live in Chicago. So much for the hot, humid theory.

Emotional upset? That I can believe. When the initial outbreak occurred I was living in a studio apartment falling down around me, ending an 18-month relationship with a psychologically abusive alcoholic, the plaintiff in a lawsuit (ultimately resolved in my favor) and between jobs. I was a bit stressed, but for better or worse, my harrowing upbringing instilled excellent coping skills. Why now if not then? I’ll never know for sure what caused my autoimmune system to shift into hyper revolt.

Over 18 months ago, I wrote about being one of the lucky ones. Pompholyx has no known cure, and most patients endure interminable alternation between steroid therapy (which temporarily subdues the swelling and growth) and escalation. It’s miserable. I used to dream of happily cutting off fingers, a macabre but welcome relief. I’d often awake in tears when I realized all ten burning digits were still in place. Chronic pain is the enemy of rational thought.

But in one of those right place, right time, great mysteries of life, raw, organic beet juice presented itself as a solution when my medical team had just about exhausted available treatment options. Had I not discovered that disgusting, beautiful, natural, thick red elixir, I’d be on disability right now rather than climbing the corporate ladder, taking on new writing and leadership challenges, or preparing to teach my first collegiate course in the spring. I’d never have traveled to Alaska or fallen in love with Bob and our dogs. 20-30 ounces a shot, 5-7 days a week, and except for the part where every fluid emanating from my body was crimson tinged, I went on as I once was.

Beet juice was a part of life, was life itself. And then all of the sudden, toward the end of October, another miracle: the pompholyx went into remission. I’ve enjoyed nearly eight symptom, juice-free weeks and counting. In preparation for writing this post, I looked up the technical definition of that word: remission. These are the three explications offered by Google:

“1. the cancellation of a debt, charge, or penalty.

2. a diminution of the seriousness or intensity of disease or pain; a temporary recover

3. forgiveness of sins.”

Through sheer luck, I’m not in financial distress. And as an atheist, I don’t believe powers higher than myself and the needs of the global community are required to guide my moral code. Guilt and I are old, longtime friends. Yet when I look at the three varying definitions of “remission,” I relate to them all under present circumstances.

In the throes of acute physical suffering, it was easy (and romantic) to wonder if the bad juju I know I’ve put into the universe yielded deserved pain. I don’t need a god’s help to see that almost everything is connected. Somehow I’d asked for this. But if so, to whom could I plead for relief and absolution? It was too, chronically late.

I don’t know what led to this pause in physical torment any more than I can ascertain what led to it in the first place. Has existential debt been forgiven, or is it (a far more likely scenario) that my human body, with all its mysterious quirks, has finally caught up to the happiness, mental health and peace I experience through better life choices?

Remission. Rumination. Resolve. So many “R” words, so little certainty. Gray areas used to drive me batty. Now I can just be grateful for the calm, taking comfort in the knowledge that if symptoms return, there are beets.


Bald Insecurity (June 26, 2012)




Boyfriend/Hairdresser 8 weeks ago: “Come on! It’s always something with you. I can’t see anything!”

Sister 4 weeks ago: “Is it because you dye your hair too often?”

New Boyfriend/Hairdresser 3 weeks ago: “Ok, now I see what you’re talking about.”

A woman historically known for her wild, curly red locks is starting to part with them, at the ripe old age of almost 34. And with this development, wherefore goes the identity?

The summer I turned 13, I took a long look in the mirror and decided that with the natural attributes of ghostly pale skin, bright green eyes and a smattering of freckles, Mother Nature was in error when she doled out a head of medium brown hair. If I was going to be continually mistaken for Irish, I might as well go all the way with it.

Except for a brief 90s dalliance with black (a huge mistake influenced by Nine Inch Nails and Nirvana) and a foray into blonde highlights last decade (the things we do for love), my hair has held one fiery shade or another for over 20 years. As the tresses curled evermore with each passing year, I alternately cursed the frizzy, unruly mess yet gave silent thanks that I was gifted with a conversation piece, a physical manifestation of my personality: untamed, sometimes glossy, frustrating and colorful.

Though I fancy myself a believer in the overused “beauty is skin deep” maxim, I rarely applied that latitude to myself. It was never enough that I was a smart kid, decent at sports with other accomplishments. I wanted to be beautiful, the kind of gorgeousness that stopped people in their tracks. I wanted to ditch the huge Haray Caray glasses that acted as a screaming billboard for my near-sightedness. I yearned for the day I would have the independence to have my awful, crooked chompers corrected through the miracle of orthodontics. I wondered if I would ever grow big girls boobs (still waiting at 33). I didn’t want to be creative and odd. There was a time I would have surrendered everything that makes me, well me, if it meant loving the image reflected in the glass.

As I grew up, sought the services of a good therapist and did the painful work of looking inward, I accepted what I had known all along: you can’t have it all and it’s a pretty idiotic waste of time to moon over your personal aesthetics. So as I have alluded in other posts, I learned to kind of like and appreciate the rest of me. Until…..

8 weeks ago when I began to notice a spot near my left temple that was hairless. I’m not talking about short baby hairs that might reflect pulling, hairbrush damage, etc. I mean bald – like it had been waxed clean. My eye, long trained to zero in on real and perceived flaws, moved to the spot by the day, then the hour, then the minute. What the hell was happening and why?

Alopecia was the first suggestion offered by the doctor, maybe stress related. Even as it started to be accompanied by intermittent headaches and nausea, I was told I shouldn’t worry. Fretting could expedite the pattern, but asking me not to worry about an eyesore which I cannot control is like asking water not to be wet. So as the spot grew in the ensuing weeks, as topical steroids were doled, I started to consider that I might soon be without my signature physical attribute. Would my personality change without the aesthetic weapon that seemed to justify a “take no prisoners” attitude? The absence of my loud hair, an armor to hide the quiet, sad shame often experienced might leave me naked and defenseless in metaphysical and real ways.

A battery of tests this afternoon will shed additional light: autoimmune disease, brain tumor, anxiety disorder. These first of these two diagnoses are obviously somewhat problematic. But all I can think about is my hair. I don’t want to lose it – or myself, especially when it took so darned long to be found.