Tag Archives: Children’s Hospital

Integration, Part III

1t5a10051Photo by Andrija Bloom

 

Gayle died when we were fourteen. We were roommates in the Hematology/Oncology ward in Children’s Hospital in Los Angeles the spring of our thirteenth year, both theoretically in the eighth grade, though neither of us actually went to school.

We kept up a constant chatter about blood counts and needle marks, bone marrow tests, cafeteria menus, diet soft drinks, jealous siblings, and the trials of our wayward hair, even as hers fell out daily in clumps, while mine grew curly and unkempt. We discussed what our chances were of ever growing up, whether we would get to go to high school, whether we would ever get to kiss a boy.

People said we could be sisters, twins even. We kept our window shade open, grateful for our tiny corner view of the mountains, the television conspicuously off, our dialogue dramatic, until one day, after multiple blood transfusions and an experimental splenectomy, I was discharged with high hopes of a full recovery. We waved goodbye, said our girlish goodlucks, and I tucked her picture into my wallet, her cursive writing wide and smiling on the back, dotted with purple hearts: here’s to a happy high school.

We wrote to each other with devoted regularity, until she died nine weeks later. I secured her letters and picture in the back of my makeup drawer and moved on. I didn’t like to think of her in the months or years after that, of why God apparently wanted her next to His side, certain that she was more of an angel than I would ever be, but not daring to question that line of reasoning. I closed that chapter definitively, turned away from the memories, tried desperately to acclimate to a life where people didn’t talk about white blood cells or platelet counts. My drive to be normal (fueled by what I now recognize as survivor’s guilt) kept me from contacting her parents, from offering her letters to them, from ever acknowledging their perpetual grief. I left her and them behind, sprinting toward what I assumed would be an early finish.

Here is her picture. I still look at it from time to time, at the frozen child she will always be in a world I have long since outgrown.

photo

I remember her blonde wig, designed to look like Farrah Fawcett. I remember Gayle’s father kneeling at her bedside, his trembling prayers to our Heavenly Father, uttered aloud, prayers that ultimately would go unanswered. Can I still be angry at that God, even now?

I spent so long repressing anger. 

When it comes to hospitals, I have no idea what is normal. But I know what is true.

I didn’t earn my life. Gayle and I were interchangeable. There was no method to the madness of our illnesses, no reason why I got better, why she did not.

We didn’t kiss, but the first boy who held my hand did so in Children’s Hospital when I was 16. Since the veins in my inner wrists and the inner creases of my elbows were blown out, he curled his fingers around the needle taped onto the back of my boney hand. I let him, because he was the only one there.

In the hospital, we were a number. Our wristbands dictated what could and couldn’t be done to us. Gayle and I had no agency, no ability to rebel. We weren’t integrated into a school or class or pop culture. We thrived on imagination and hypothesis. Gayle talked of love and I told her we would have it. We wanted out of those lonely twin beds. We wanted someone to love us enough to invite us into their world, to be introduced to their friends and family. We wanted to know we were real.

I am still fighting to be real.

During my first year of college, I received a registered letter in the mail from Children’s Hospital, suggesting I get my blood tested immediately. The blood donated in the eighties was not screened for AIDS. Some children from those months in those wards were now HIV positive. The letter informed me about testing options and recommended I seek appropriate counseling.

This didn’t frighten me in the least. As a virgin, I felt no stigma. I went to the clinic with barely a thought of the past or of the future. If my luck had run out, I had lived more years than I had once hoped for. I had made it out of the hospital, into college, and I trusted in all my youthful naivete that I had already lived a bigger life than Gayle.

Now I know how finite life is. Now I know there are things I haven’t done, things I hope to experience before its my time to leave this earth. There are things Gayle and I talked about that I still haven’t done. There are ways I still want to grow.

As grown up as we thought we were, I know now that our lives had barely begun, that the decades since have changed everything we once knew. I see my son and my daughters and my heart crushes the air from my chest for Gayle’s parents.

I have four adult children older than I was when I got the call to get tested.

I answer a new call, now. And no matter what the outcome, I know my death would do more harm to them than it would to me. There are milestones in their future that would be tragic without the presence of the woman who bore and raised them. I may be easily and immediately replaceable as a lover and life partner, but I am not replaceable to them.

Gayle has no children. Gayle has an eternal adolescence looking back at me from her angelic photo. Is this any consolation to her father and her mother, for whom she will always be a child, their beautiful and innocent teenager, stuck in a dated hairstyle, without even the luxury of hair?

I don’t know what my next hospital stay will include, or whether I will ever have the integrated life she and I dreamed of. But I know the memory of Gayle will be with me, and I know if she were in the room, she would hold my hand until the very end, and she would say, with her sweet demonic smile, “at least you got to kiss a boy.”

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Anahata

For the person who survived on scraps of affection, there may be a lifelong habit of contraction that is only obvious when you are showered in appreciation. Here the heart is challenged to receive at a greater capacity than it has ever known. Bearing the pleasure means beginning to notice those jumpy places which anticipate pain, which expect abandonment, which brace for danger when it’s no longer there. Only then can we begin to invite a gentle exploration of pleasure, allowing life into those areas which have been cordoned off in self-preservation. We must acclimate, often through grief, to the life-giving nature of love which is all around us waiting to be received.  — Toko-pa Turner

When I was Children’s Hospital in Los Angeles for the first time, I was 10 years and 5 months old.  I was put in “isolation” in the Hematology Ward, which means I was housed alone, and medical personnel wore masks and gloves when they came into the room. I didn’t understand what was wrong with me, and neither did they, but I was covered in bruises and petechiae, and I had what looked like a single bug bite near my pubic bone. They drew vials and vials of blood, took my vitals every few minutes, lanced the welt, and discovered that my platelets were dangerously low (below 5,000 per microliter) and I had chickenpox. These may or may not have been related.

I spent a lot of time alone in the hospital.

For the next 3 years and 3 months, my life revolved around my illness. When I wasn’t in the hospital, I often slept on my grandparents’ fold-out chair, because they had a phone and lived less than an hour from Los Angeles. They were old and my grandmother had had a stroke a few years prior. The house was quiet and I often went days without speaking to anyone, or anyone speaking to me. I didn’t go to school, and for a long time, I had no access to books. I spent a lot of time on the fold-out chair, looking at my grandmother’s accordion desk. When she died, it’s the only thing I wanted.

I rarely talk about any of this.

It wasn’t really the illness that broke me. It was the isolation, the distance from the community into which I was born, the inaccessibility of my siblings and my parents–who all lived far away in the mountains, and for whom visiting wasn’t convenient or a priority.

Three years is a long time at that age.

The girl in that hospital bed has begun appearing to me lately, asking for my help.

This may or may not be related to learning to accept love.

In the chakra tradition, the heart is the center, the essence, the spiritual core, the source from which energy flows in each direction, from the lower three chakras that represent physical matter, to the ideologies of the higher three chakras that house our spirituality. The heart chakra integrates and balances the various aspects of our being, including what we long for and what we fear.

As we age, we continue to hold awareness of all the ages we’ve ever been. We might think of the entity comprised of mind/body/spirit as a container that houses all parts of ourselves, from the needs (met and unmet) of our bodies to the needs (met and unmet) of our spirits.

The task of the heart chakra is to recognize and integrate the disparate aspects of ourselves, from the performing parts we embrace to the shadow selves we fear. For most of us, it is a challenge to have compassion for all of these selves, especially those we believe are broken.

Rather than seeing love as an extension of need or desire, when we develop unmitigated compassion, we can begin to build an empathetic connection, starting with ourselves, and extending to others.

When we work to balance the fourth chakra, we begin to transcend ego, and loosen our self-defined boundaries. While strong boundaries are necessary to protect ourselves from abuse, they are also an attempt to shield ourselves from pain and vulnerability. But pain and vulnerability are central to the human condition, and denying them keeps us closed off from reality. Meditating on the heart chakra helps us recognize the people, places, events, commitments and emotions that scare us the most. Facing these with with an open heart is central to our well-being and to our growth.

The world I grew up in was the only world I knew, and it was so normalized, it has taken me a very long time to understand what I gained and what I lost from my isolation.

I wish I could go back and hug the girl in the hospital bed. I would tell her I love her, and I would sit with her and hold her hand and read to her, and I would assure her that whatever happens, I won’t leave.

 

 

 

 

 

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