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With an invading disease come other invasions, of privacy and physical space: Holly Ladd on ALS and intimacy out of necessity. (Charles Dharapak/AP)

My name is Holly Ladd, and I am a 58-year-old woman with ALS (“Lou Gehrig’s Disease”). I was diagnosed in August 2012, after five months of increasing difficulty walking. Ten months later, I live my life from a wheelchair, no longer able to walk, and I am quickly losing use of my arms and hands. My voice is soft and muffled, and will be useless in a few months.

In December 2012, I left my 30-year career in public health and international development, in which I traveled alone to Africa and South East Asia. Now, I can’t travel alone from my bedroom to the bathroom.

Having the support of Joan, my beloved partner of 23 years; my beautifully spirited son, Michael, whom I joyfully watched graduate from college this month; many close friends; as well as excellent medical care and a home health aide seven days a week, I am one of the “lucky” ALS patients. But like all of us with this devastating disease, I am frightened and furious. It has given me much to think about.

As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

Lately, I have been thinking about intimacy. Not sexual or romantic intimacy, but the full range of physical, emotional and — dare I say — spiritual intimacy. We undress in front of our sexual partners, our physicians and maybe strangers in a locker room, but most of us would not consider having someone else routinely remove our clothes. A few special friends may know some of our fears, our secrets and maybe our prayers.

But generally we guard these parts of ourselves well — some of us very well indeed — with what I like to think of as our personal sentries. These sentries are the tricks, diversions, dodges and distractions we use to keep the world at bay. I imagine mine dressed rather like the Swiss guys in striped pantaloons who guard the pope.

Among the many choices we have when suddenly sick is whether or not to fire our sentries. Don’t we need them to guard our vulnerable selves even more when we are ill? Isn’t this the time to circle wagons? And how do you know whom to let past the palace guards?

So far, I have told my sentries to stand down; I have yet to fire them. They are milling about in the corner in their purple and gold stripes, helmets off, with an occasional cigarette passing between them. I might be able to fire them someday, but for now they still keep a watchful eye and spring into action from time to time, like a dog energetically greeting the postal carrier. Even so, while they have been relaxing, greater intimacy has been happening — by choice and by necessity.

By necessity, there are a whole lot more people in my life now. Most notable are the four women who come at different times and frequencies to care for my daily physical needs. These people bathe me, brush my teeth, wipe me, feed me, get me in and out of bed, and dress and undress me. As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

Some of those who care for me have such a well-worn familiarity with this disease that they anticipate both my physical and spiritual needs before I can imagine going there. They prepare me, and they prepare the path in front of me.

There are medical providers who know the science and my body — how it is collapsing. Two or three have also seen some of how my heart has broken. And my psychologist helps sort out the feelings I have about impending death from those that were born in ancient losses. With a couple of these, I discuss both heart and health, and they will be trusted with making the final call.

I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.

What sets these relationships apart is their inequality. They are one-way caring. No matter if I wished it otherwise they are not friends, and I do not share in the details of their lives. I do not question the authenticity of their caring, nor do I think them impervious to my not-so-subtle attempts to ensure that they like me. No, these intimate strangers are exactly as they need to be in order to be ready to care for what comes next. But with some I do wish we had met in a different way at a different time.

Lines blur, as friendships now include care-taking in addition to all the normal expectations I have of those inside the palace walls. Seeing a group of out-of-town pals once a month helps to mark the changes, and I noticed last weekend how dependent I was on them and how much more intimate physical care they had to do for me. I also noticed how much work it has become for me to actively remain in a conversation. Among friends, I have had to send the sentries out for coffee while membership in the “bare butt club” (those who take me to the bathroom) grows, and dinner conversation includes a discussion of the pros and cons of going on a ventilator. “Joshua fought the battle of Jericho, and the walls came a tumbling down.”

As things become more difficult, I know, I will need to let more people past my resting palace guards. It is a balance, and I hope I will still be able to decide how much to share, and with whom. Already, I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.

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  • Kylah G. Klinge

    Unexpected, brilliant, breathtaking. Thank you, Holly.

  • Riverwaif

    WOW! Powerful! Yes, thank you! I second that sentiment. Your insight and dignity is a beacon.

  • David A.

    I only just learned you had ALS, Holly. This is a beautiful piece of writing. Having gone through Bill’s illness, now 14 years ago, what you write rings totally true. I’ve thought of you (and all the work we did together years ago) a lot this week as the Fenway/AIDS Action merger happened .

  • Ximena

    Thank you, Holly. Please know that this “forced intimacy” is so often a mutual experience. Having given care to several loved ones, my sentries took a long hiatus for which I am a much richer and empathic being. I felt deeply and loved and learned so much. Love and light to you dear lady, love and light.

  • http://thealsexpress.com/ aprilals

    I’m dealing with the same feelings and know much more is ahead. Very well expressed, Thank you

  • Marty Murray

    That’s all interesting. We enter new experiences when we deal with new problems. Another new experience you can enter is that of learning to heal yourself. Whole new world.

  • Joyce Kauffman

    Holly – this is a beautiful and poignant piece. I will be thinking of you. Thank you for sharing this particular intimacy which has meaning far beyond the present moment.

  • Maureen

    Holly

    Sharing this intimate perspective made me wonder how our parents might have felt– being private, modest, and self sufficient people all their lives– when we briefly entered that realm of attending to their personal care or arranging hospice. Our greatest kindness should be our respect for another’s feelings, preferences and boundaries–and being patient before proceeding–which was the hardest part sometimes. Thanks for your insight.

  • Guy

    As I think about my own aging, I imagine that my Swiss guards will have to give way; I hope I can allow that with the insight and forbearance that Ms. Ladd so beautifully exhibits. Even more, I hope I will have, like her, “a few special friends [who] may know some of our fears, our secrets and maybe our prayers.”

    Guy

  • Kathleen Crowley

    Holly — A beautiful and honest piece. You’re so right – letting people ‘inside the palace walls’ as the body fails is one of the hardest things. I will be thinking of you and wishing you well.

  • Frank Lee

    this is courageous and candid. you spoke for me — though I don’t have
    ALS — as I become older and more irrelevant — i contemplate “dismissing my sentries” — who would even notice?

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