Tuesday, December 8, 2009
Adoption, Medical History, & Feeling Helpless
But then there are the emergencies.....
I was 21 years old and had what I thought was an enlarged gland in my neck. I ignored it and it grew and grew. A nurse friend of mine was prodding it with her finger one day and she said "you know, if it's a swollen gland due to fighting a cold, this really should hurt. Since it doesn't, you ought to get it looked out."
So I did. Scopes and scans ensued. Four doctors later, I was finally in the chair of a pathologist. Let me tell you how terrifying it is to have to lay back with no local anesthesia while someone inserts needle after needle into your neck, poking away trying to get a tissue sample to come out. That of course was no more terrifying than when they look at it under the microscope while you’re still sitting there and tell you "we don't know what this is." Followed by, "is cancer in your family?"
The recommendation by my ENT was to get this thing out as soon as possible. My doctors knew I worked in the medical profession. The suspicions of cancer weren't easy to hide from me: I could read the ICD-9 codes on my scripts "lymphoadenopathy of unknown origin" and "lymphoma." Cancer was something we talked about. The unknown overwhelmed me; the unknown of what my DNA itself predisposed me to.
I remember laying awake on my honeymoon less than a month before my surgery wondering how much longer I'd have with my husband. I wondered if I’d live long enough to have children.
The procedure was not going to be simple; I would need to be under the knife for about four hours. The tumor was under my facial nerve which would need to be stretched and traumatized by a neurologist the entire procedure to get the tumor out. Even if it wasn't cancer, it was made very clear to me that my 21-year-old face might endure stroke-like facial paralysis for an unspecified amount of time. Possibly forever.
I remember being wheeled into the OR when the IVs started going into my arms. It all suddenly became very real to me. I was terrified and tears began streaming down my face. This was my first surgery and the prospect of so many unknowns was overwhelming. Knowing that without entitlement to an on-going family medical history that I could experience this and more situations like this over and over again was exhausting.
The nurses couldn't figure out why I was so upset; they had given me medication to relax. Yet I don’t think there’s a pill to make helplessness go away. One nurse grasped my hospital ID band and noted my date of birth aloud "oh, she's just a baby," she said with compassion filling her voice. They hugged me.
I'm not a baby anymore. I have a baby of my own and now, I worry about him. I am the only medical history he has to go by and you see how far that has gotten me.
We forget that denying someone's right to information also denies their children and their children's children--so on and so forth. Adoptees have the right to seek contact and ask for on-going medical information. Our lives are literally on the line here. Everyone who loves an adopted person should be concerned about the adoptee's access to information for health, wellness, wholeness, identity.
Amanda H.L. Transue-Woolston, MSS, LSW is a social worker, author, and speaker serving the adoption community through individual and family clinical work, groups, writing and teaching, and policy advocacy. She has participated in more than a dozen publishing projects, including authoring, The Declassified Adoptee: Essays of an Adoption Activist. Amanda is the founder of Lost Daughters, a collaborative writing project featuring more than 30 adopted women, and the founder of Pennsylvania Adoptee Rights, a grassroots policy advocacy movement. Amanda was featured as an activist by Yahoo!Voices in 2009, and is listed in Adoptive Families Magazine’s Top 20 Adoption Blogs.surrounding systems.