The Phoenix Zine



My niece turned two a couple of months ago, and she’s learning more every day. Newly aware of her body and with a penchant for the word “no”, Natalie can now tell people who she wants to change her pull-up or her clothes and who she doesn’t want to change her.

In response to this awareness my sister has responsibly introduced a new book into my niece’s collection of picture books, a book discussing the good and bad feelings that can accompany physical contact. The book talks about how hugs and kisses from people who love you can feel good, but informs children they have the right to say no to physical contact when it doesn’t feel good or the child isn’t in the mood to be touched.

And, of course, the book covers exceptions. Certain places are meant to be kept private unless an adult is helping you in the bathroom, or when you need to be examined by a doctor.

It was when I hit puberty I really started to have a problem with the last addendum. Logically, it made sense to me that a doctor needs to have access to your body in order to help you, to possibly even save your life. Practically, however, I had major problems. Having reached an age where privacy became important and my body was changing and awaking to new adult feelings and desires, it bothered me when doctors wanted to do a check up, especially if I didn’t like the doctor in the first place.

In the beginning, I fought it. When my doctors actually asked if they could do something to me, I said no. And when they didn’t ask, I screamed and cried and did my best to prevent it from happening.

Through being ‘uncooperative,’ I managed to get rid of one of my doctors. Because I had successfully fended off his check-ups time after time, there was no point in me continuing to see him. Also, at the time, I didn’t require him for active care, he saw me because I was a good research subject.

Another doctor, the one I disliked the most at the time, endured one of my tantrums and then sent me a letter quoting 1 Timothy, chapter 4, verse 12 from the bible. “Don’t let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity.” He meant to encourage me in my efforts to protect myself against things that felt wrong to me, but instead the letter only angered me.

The anger stemmed from the mixed-messages I was receiving. On the one hand, doctors are trusted people who you are told to allow complete access to your body (including the private parts no one else is supposed to see) regardless of whether you get a good or bad feeling from what the doctor does. But on the other hand, here was a doctor who was telling me I was right for fighting against what felt bad to me.

Instead of directing my anger at the message of mindless acceptance ingrained into children at a young age, I got angry at the only one who told me I was right.

It’s difficult to argue the first message isn’t a valuable one. A lot of children and people will never have to see the doctor as many times as I have. Some people will never have to stay in a hospital at all. For those children and people, it makes sense to say doctors are the exception to the rules about privacy and good and bad feelings. People should listen to their doctors and accept them as wise people worthy of trust.

But when you’re a child who needs continual medical care, it’s different. I’ve never had a positive opinion about my body, mostly because I’ve felt so betrayed by it over the years. It’s difficult to understand and maintain boundaries surrounding who does and doesn’t get to touch you when all you’ve known is having to let strangers do medical procedures on you that are sometimes very invasive and painful.

Over the years, I fear I’ve given up fighting for my boundaries. I’ve read that victims of sexual assault sometimes have the ability to leave their bodies while the abuse is taking place. I have never been sexually assaulted, but there’s a numbness that comes over me now when it comes to physical contact and doctors. I became aware of the numbness only recently, when after an echo the male technician wiped the gel off my chest instead of handing me the towel so I could clean myself up.

In retrospect, it seems like such a small thing; a technician being thorough in his job even. The thing is, I didn’t even realise how much it bothered me until I was dressed again and walking out of the clinic. Technicians are usually very careful about the contact they have with the patient. Yes, contact occurs when performing a test, but afterwards a patient’s dignity is maintained when they clean themselves up and are allowed privacy to dress.

I can’t change what has happened to me, but I can choose the way I deal with it now. I understand a child who needs medical attention does not have the mental ability to assess and/or refuse it, but I also understand from being such a child that some boundaries do need to be set.

First we need to work on giving a child power where they have none. A treatment room works like this: when a child is staying in the hospital, it is understood by doctors and the like that the child’s room is their own. Therefore, any medical procedures the child needs must be performed in another room, the treatment room. This makes the hospital room special and gives the child a safe place to go where nothing painful or scary can happen to them, allowing the child to regain some control over an out-of-control situation.

In “Alex: The Life of a Child,” Frank Deford talks about the importance of a treatment room for his daughter, Alex, a seasoned veteran of hospital stays thanks to her Cystic Fibrosis.

“Once an especially officious young resident came into Alex’s room to change her IV from one hand to the other. Without mincing words… she made the point well enough – that he better get it straight: IVs were only given in the treatment room. The kid doctor said he was sorry, but that the treatment room was in use right now, so they would have to make do with her room.

Alex then said, no, wait until the treatment room is free. The resident said there wasn’t time and started approaching her.

Alex drew back on her bed. “No!” she screamed. “This is my room! This is my bed! You don’t have any right to hurt me in here.” And then she began to cry.” (1)

And for those of us who are not children anymore but still find ourselves having trouble with physical boundaries, well, I want to say something glib and mildly reassuring, such as, “Time heals all wounds.”

If only there was a time limit on pain. There’s a quote in an article by Lauren Slater I think describes the situation accurately. She writes “I have not healed so much as learned to sit still and wait while pain does its dancing work, trying not to panic or twist in ways that make the blades tear deeper, finally infecting the wounds.” (2)

Except in its truthfulness this quote is also disturbing. Yes, I can identify with what Slater says; I know what it is like to sit still in order to minimise the pain of remembrance. I have felt pain like blades tearing at my insides, I have cried uncontrollably with anguish when I try to put myself in the place of the little girl I once was.

After these periods of being overwhelmed by what has happened to me, I have done my best to stuff it all down inside. And after I stuff, I wonder, is that all there is? I know from experience trying to ignore painful things from the past doesn’t work. Sooner or later, the pain and anger always surface.

It doesn’t help me. I can’t become the person God has created me to be if I continually stuff down all the painful things that have happened to me. As much as I struggle to ignore these experiences, they have helped make me who I am at this moment. They will continue to shape my life and influence my decisions in the future.

There isn’t a reason why bad things happen, but meaning can come out of it. As a social work student the reading I liked best talks about the importance of bearing witness.

Speaking as a social worker, Dick Blackwell writes “At a personal level we bear witness to who the client is and what their experience has been. We provide a recognition of what has happened, how the client’s life has changed and how they have come to feel about their lives and themselves. It is through this context of recognition that the client can piece together the shattered parts of her subjective continuity and recover her sense of integrity as a whole person…. What we are often dealing with is a present which is overwhelmed by the past: a past that contains the present and the future, holding them in abeyance in a state of induced terror, grief and outrage.” (3)

The first, most painful step is you must bear witness to yourself. I struggle with allowing myself to feel how I felt when I was little and to think about all the times physical boundaries have been crossed because I’m afraid the blades of pain will tear me apart inside. However, until I am honest, how can I change things and grow as a person?

Next, bearing witness means sharing your story. I was talking with my sister, a counsellor who works with families dealing with illness, about how 20 years ago when I was really sick and still little, the doctors’ focus was primarily on fixing the medical problem. Now that medicine has advanced and more people are living with chronic illness, the focus can begin to shift to the impact such medical interventions have on a child’s sense of self, their emotional and physical well-being.

If we who have experienced chronic illness as children don’t share our stories, how we can change what we teach future generations so they won’t have to go through the same thing?

1. Deford, F. (1984). Alex: The Life of a Child. New York: New American Library.
2. Slater, L. (1996). Three Spheres. In Welcome to My Country. (pp.173-199). Random House.
3. Blackwell, D. (1997). Holding, containing and bearing witness: the problem of helpfulness in encounters with torture survivors. Journal of Social Work Practice, 11(2), 81-88.

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