Truth and Its Consequences

"When others asked the truth of me, I was convinced it was not the truth they wanted, but an illusion they could bear to live with."

- Anaïs Nin

I have inflammatory autoimmune disease, an atypical form of Wegener's Granulomatosis. It's part of the family of rheumatic diseases that includes Lupus. I was diagnosed at 12 years old; the doctors thought I had Juvenile Rheumatoid Arthritis. Symptoms came suddenly and disappeared mysteriously. Over time, new symptoms began to take over and ultimately claim an identity. I discovered ways to hide the truth, despite multiple rounds of serious immunosuppressive drugs, including continued protocols of anti-cancer drugs and their side effects. I used artful deception successfully to keep the worst episodes a secret from many. I purchased wigs that looked remarkably similar to my own hair. I learned how to use tricks with expensive cosmetic products. There were suddenly announced trips out of town, which were actually hospitalizations.

Two years ago I told the truth about my life in a dual memoir, Dancing at the River's Edge, written with my doctor, Michael Lockshin, M.D. Many other people have had similar experiences with chronic conditions. I was gratified that readers found our words helpful. Some friends who read the book felt I had betrayed friendship by not disclosing many experiences. "I would have done more if I had known" was a typical response. The third post-publication wave of recognition took me by storm; I became A Public Sick Person. There's nothing I can do, short of changing my name. But I don't want to disown the book or my identity. I confess I'm not always comfortable with what strangers and friends know, nor have I adjusted completely to the ways the book changed essential parts of my life. Write a memoir, and you become less private and more public; it's a free choice and I made it. However, I didn't calculate accurately how much of my carefully crafted disguises would be ripped away.

Sometime after the book's publication, I had a serious relapse. I was afraid. I felt sorry for myself and let down my guard (or "acted out") in the presence of a trusted friend. I expressed frustration without censoring myself. He reacted sharply. The remark was deeply wounding. Upon seeing the pain the thoughtless comment caused, he immediately apologized. I knew the apology was heartfelt and accepted it. Yet, I couldn't help wondering: Would I have so easily dropped my well-practiced techniques of illusion if I had never written the book? In fact, I know I would not. Without the published revelations, I would have remained far more guarded and cautious.

For most of my life I lived by the dictate of Nin's words because I couldn't figure out what else to do. I've not (yet) achieved the right balance in relationships when it comes to illness. I've asked myself: If I don't confess the details of my disease will it turn out better? If I am silent about its realities or become invisible when an unpredictable flare strikes would I have the chance for enduring unconditional love? Or, would someone stay with me a little longer, and offer gentle solace when I'm frightened? At this juncture, such musings are pointless. The facts are out there for anyone to read - in print and eBook formats. A new question emerges: is it wise to trust anyone with my needs and few remaining dreams? Many of us who are mostly alone (or always alone) and also sick engage in inner dialogues. Can we (or should we) trust others to accept our physical and emotional fragilities with tenderness?

There are times when emotional solitude and the humiliation of being a dreary obligation overtake my thoughts. It is then that I desire a way back to the Nin days when Illusion Was Truth. I want to pretend all is well, or disappear from view when I can't disguise the progression of disease. I know that's not a healthy or practical choice for the long-term. I also acknowledge it is a luxury because part of the time I can still choose to hide, since my illness is not immediately or always visible to others. There are so many chronic diseases and disabilities that can't ever be hidden or shielded from view. That's my call to arms about staying nakedly in the world with what's gone wrong with my body and so many others who are ill and disabled. It's what made telling the story of my truths and secrets relevant to the larger fight for equality.

We're not broken nor are we pitiful. We shouldn't allow ourselves to become illusion-contortionists trying to make the well and able-bodied feel less embarrassed or uneasy in our presence. Those of us who live everyday with the reality and the threat of more illness and the challenges of disability know the meaning of limitations and the hard work of endurance. We are resolutely determined to empower each other by the stories of our lives and our differences. Illusions and deceptions actually facilitate and enable Ableism and Ableists. A far better avenue to justice and equality is for the Able-bodied and the Well is to allow them to become aware of our truths and integrate those realities into their lives and their consciousness.