Among the hundred thousand worries adoptive parents harbor before, during and long after their adoption has been finalized, one of the most common concerns focuses on their child’s family history, which includes, of course, the possibility of inherited diseases about which there is no way of knowing.
This is especially true in international adoption, where more often than not, whether true or not, there is no family medical history available. Though things are slowly changing (at least in Ethiopia, where my personal experience lies), still, the not knowing if Little Lovey has a predisposition for diabetes, heart disease or any kind of psychiatric disorder, well, in weaker moments this fear hits you over the head like a tree crashing down after a sudden thunderstorm.
And then the great spiritual lessons arrive: a) stay in the moment; b) do not create drama where none lives; 3) let go and let God; 4) have faith — all is in Divine Order; and so on.
Recently, however, a tree of a different variety came a tumbling down — all over me, my husband, and of course my daughter. But this particular blast was unexpectedly aimed at me, and not the family member one would think would take the hit in this situation. I was the one with the genetic problem, not my Ethiopian-born daughter, who, thus far, thank you God, is as healthy as they come.
After decades of misdiagnosis, including Polycystic Ovarian Disease, Endometriosis, Crohn’s Disease and depression, a 24-hour urine sample revealed Coproporphyria (one of the many porphyrias), a rare genetic blood disorder that 50% of ER physicians have never heard of. Apparently, neither had one of the most highly revered gastroenterologists in the country, several well-reputed ob/gyns and countless supposed excellent alternative doctors, including D.O.M.’s, broad-minded internists, one Pharm M.D., a medical intuitive and several psychics. Furthermore, I got if from either my mother or my father. Before I was born.
So, at 50 years old, I am left with a mind dashing from this era of my life to that era, the dozens of moves and job changes, this new doctor, this moment and that moment of being made to feel weak and un-fun, a party-pooper, a chronically ill woman and even a serious hypochondriac. Though I now know that these labels were and are not true, thirty years of hearing it from those who are supposed to love you the most (except you, Mom and Dad; except you, Husband!) have taken its toll. Somehow, for some reason, there is a part of me who still thinks it’s “all in my head.”
Though there are several critical topics to address here, from the lack of information most adoptive parents of internationally born children are given to the simple ignorance of the medical community, what I also wish to bring forth is something my daughter once learned in preschool: “You get what you get and you don’t throw a fit.”
Admittedly, during this last bout of the mis/undiagnosed disorder (after swallowing a round of sulfa antibiotics prescribed for an upper respiratory infection), I did throw a fit — many toddleresque rants, in fact. I felt scared, as my pinky finger swelled, turned purple, felt frostbitten and sliced when accidentally touching paper, and peeled. I stomped my feet and cried after 14 tubes of blood, a hand x-ray, and an hours-long appointment with my first rheumatologist revealed: nothing. My body continued to feel vile, muscles aching and weak, nausea eliminating regular food intake and keeping me up at night, fatigue, depression, anxiety and, well… I had hoped for a diagnosis of Lupus, or arthritis — anything to finally know why I periodically, for as long as I can remember, feel like killing myself.
The good news is: Now I know. The bad news is: There is no cure. The sad news brings regret for not having both ovaries removed during the hysterectomy. And feeling a waste of three decades when I could have been having fun, traveling more, seeking full-time employment with exciting, global corporations. I could o’ been a contender.
What is porphyria, then? According to the American Porphyria Foundation: “Porphyria is not a single disease, but a group of at least eight disorders that differ considerably from each other… The porphyrias are rare diseases. Taken together, all forms of porphyria afflict fewer than 200,000 people in the United States.”
Most importantly, who should know about porphyria? Every medical student lucky enough to be admitted into a curriculum that apparently does not cover certain disorders that can ruin an entire family’s collective life. The gastroenterology student, who may one day find herself scratching her head with a suffering patient whose tests do not reveal a clinical diagnosis. The gynecologist or nurse practitioner that every other month sees a woman in pain dealing with same odd mid-cycle symptoms that weren’t presented in the textbooks. The psychiatrist who can see no obvious reason why the woman sitting before her is so depressed.
In the end, what I want to express clearly, and one of the points of this particular article: Though we may never really know ourselves or the members of our families — whether we gave birth to this person or she grew inside another woman’s womb — it is our job as people who love deeply those with whom we live and consider “clan,” to move mountains in order to know what we think we need to know. And, when finally the mountain has been shifted and still nothing lies beneath, let it go. There will always be something lurking to cause anxiety. If you invite worry into your castle, no dragon will be big enough to slay it. Ever.
To be continued.