Genetics and Inheritance

A couple of weeks ago I saw my new rheumatologist who invariably asked, "Does anyone in your family have... ?" and I once again said, "I was adopted…" and trailed off as she raised an eyebrow and jotted that down.

I looked down at my hands... at my now twisted and deformed fingers... and wondered how many female ancestors of mine suffered from the same disease.

I'm scared now. I wasn't before. As long as my x-rays indicated OA, no matter how awful I felt, I thought it probably wouldn't get much worse. But now the x-rays are telling a different story. Now it seems that, to quote my doctor, "mistakes were made in the past" regarding my diagnosis - and that what's happening to me, while not fatal, is not good. It seems that my immune system has gone awry. My body has turned on itself and the results are that my joints are being destroyed - and at a rather rapid clip. Apparently it started a long time ago in the smallest joints (toes and fingers) and has now progressed to the larger joints... pretty much all of them, from shoulders to ankles. It is very painful… and chronic pain is very debilitating in many ways.

Whatever this is, though - this insidious, destructive and as yet unlabeled form of erosive arthritis - it is hereditary. I inherited it from my mother and she from her mother and so on and so forth. Of course... my mother didn't live long enough to get it... and I don't have any pictures of my grandmother which show her hands - and she died when she was 55, so maybe it hadn't hit her full-force yet. But it occurs to me now that it would have been really nice to have known about this over twenty years ago when the first little symptoms appeared. Nothing much... a pop in my knee when going up stairs... a bout or two of "frozen shoulder"... but had I known about a genetic disease lurking in my family tree and that my risk of getting it was high, I would have insisted on diagnostic tests then, at the first knee pop, and I certainly wouldn't have allowed my doctors of the more recent past to have blown me off as they did.

I "play" the piano on a pillow now since I can't actually touch the keys without incredible pain. It hurts like hell to type but I do it anyway because - well, just because. I can't type very well anymore - I make a lot of mistakes and am slow as molasses - but (unfortunately, I have time) and that's what Spell Check is for. (I love Spell Check!) Some days it's hard to walk and some days I can barely get out of bed... and some days I go back to bed and cry from pain and exhaustion.

I'm now adjusting to very aggressive drugs that have terrifying side effects, but that can halt or at least delay further damage and that will hopefully diminish the physical pain. I wonder with great concern if I'll ever be able to work again. An artist with fingers so badly damaged that a fist can't be made anymore with either hand? Hmmmm… it seems unlikely - but then, on the other hand (no pun intended), Beethoven composed some of his greatest works after he became deaf... but I am hardly in the same league.

So far, my half-sister has been spared. Her daughter, my niece, is at risk, too... as are any daughters that she may have. But at least we know now. Knowledge is power... and the next generations are now empowered.

My point? My point is... closed adoption and closed records suck. No adoptee should ever be denied her or his own genetic history, medical or otherwise - ever.

All Reunited

It seems to me that most of my adult life has been spent in searching for my natural family... not every single day of every week of every month, but it did take 25 years to finally find my three younger siblings. "Lee" - my half-sister, 17 months my junior... "Butch" - my younger half-brother, born 16 months after "Lee" was... and Michael, my youngest half-brother… who was born 16 months after "Butch". Hmmm - a definite pattern here. By the fall of 1956, my 24-year-old mother had had five babies in six and a half years.

When I was told of their existence way back in 1975 I was confident that I would find them in just a few weeks. I thought it be would easy to find them - that an unusual surname like theirs would be a cinch to trace. Not so. They had been adopted after their mother's death... by their father's mother and her 2nd husband, which meant a different surname - and as all three had been born in California (A CLOSED STATE), their birth certificates had been sealed - and as they had been adopted somewhere in the Midwest, I had no idea where to try to find their adoption decrees. I couldn't even find their father and I had his full name. My search for them stalled.

Time passed. Someone invented the Internet, the World Wide Web and home computers came down drastically in price and my husband bought our first Mac - and I discovered that I could search for my past, for my siblings, for my grandmother, my natural father or for just about anyone right from the comfort of my very own home. No more days spent at the Hall of Records downtown (and they had moved the Birth and Death Records to another location much further away by then anyway)... no more days spent at the library combing the telephone books state by state... no more waiting for weeks and weeks to hear back from the Vital Statistics Departments of every Midwestern state in the Union that there was nothing in their records that matched my inquiry.

One night at about 3 am, during one of my obsessive search sessions, I was searching the database at Ancestry.com for an ancestor from the 18th century and absently typed in the name of my natural mother's husband - the father of my younger siblings. To my amazement - to my shock - to my joy - I got a hit. SUCCESS!!!! Someone (a distant cousin of my siblings' step-grandfather, the one who had adopted them) had submitted her entire family tree to Ancestry and there they all were... all three of them. Their father was there, too, of course. And no wonder I couldn't find him - he had died in Iowa in 1976.

I couldn't believe it. I leaned back in the chair and said out loud to my cat, "I did it. I finally did it. It's over." He purred his applause. I crawled back to bed and tried to wake my husband... "I found them - I did it - I found them". He murmured something like, "That's nice, honey..." but I had to wait awhile to share my news... he's a very sound sleeper. He practically slept through the Northridge earthquake as our 1920's Sears-catalog house rocked and rolled as if a train was crashing through the center of it... so this certainly wasn't going to wake him up.

I immediately e-mailed the woman who had submitted the family tree and over the course of several e-mails told her the whole story. She was fascinated - but being such a distant cousin, didn't actually know this branch of her family at all. There was a minor error in her information regarding my sibs but she decided not to correct it in the hopes that perhaps one of them would also stumble across her entry at Ancestry.com and e-mail her with the correction.

A wise woman. For that is exactly what happened. Well over one year later, I got an e-mail from her out of the blue saying that one of my brothers had contacted her about the error, that she had told him my story and that he wanted contact with me - was I still interested in that? WHAT?!!!! Hellloooooooooooooo!!!! Does a bear s___ in the woods???

"Butch" and I began corresponding via e-mail, sharing and catching up on two lifetimes and filling in some of the gaps of the past. He and his sibs had had no idea at all that their mother had ever had another child - let alone two.

He had lost touch with his older sister and younger brother - deep scars from their painful childhoods and very different interests did little to keep them connected and there had been no contact between them in many years. After about a year, I asked if he'd mind if I pursued contacting them and as he had no objections at all - I did.

I had wanted to call my sister first - for one thing, it was her birthday the day I had steeled myself to make the calls - and after arguing with myself about the pros and cons of laying this shocking bit of news at her feet on her birthday, I picked up the phone and punched in the numbers.

An answering machine answered. RATS! I hung up without leaving a message. Not to be deterred, though, I paced for a while, tried to calm my churning stomach, rehearsed what I was going to say, and then called my youngest brother.

His wife answered the phone. Once I knew I'd reached the right guy, I forgot my rehearsed speech and blurted everything out to her in a rush of words. When I finally stopped for air, she asked, "Wouldn't you like to speak with my husband"?" "Yes", I said gratefully. "Yes - I would."

Michael came on the phone. I said what I always say - "Please - please don't hang up on me - let me explain." And I began to tell him the story of his natural mother who had been killed when he was 18 months old and of an older brother and sister who had both been adopted out at birth. He was, I think he would agree, in a complete state of shock.


I have now met all three of my younger siblings, f2f, as we say in Adoption Land (face-to-face).

I met my sister first... she came to California in October of 2003 from the south-western state where she has lived for many years and we spent five days together. We did a little detective work in Santa Cruz, where our mother was killed, and we stirred things up a little bit in Tulare, where she had been raised. We visited her grave in the pouring rain. We shared the stuff that sisters share, we clung to each other, we laughed and we cried.

"Butch" came to California a few months later from the east coast state where he lives. His itinerary was a little different, preferring to get acquainted with the living first. The timing was a little awkward for me as I had a freelance job with a hot deadline the week he came - but we still managed to spend time together and he was able to meet our older brother as well as our aunt and uncles who never met their older sister Nancee.

Finally, this past February, Michael came back to California from Nebraska where the trio were raised and saw the Pacific Ocean again for the first time since he was about two. Most of the five days we spent together was in Santa Cruz. We looked at the sea... he couldn't get enough of it - we beach-combed for shells... and when we retraced the route on West Cliff Drive that Nancee and Joseph Henry Nickels took that fatal night and got to the place where the motorcycle crashed through the barrier, we argued about where exactly to put the roadside memorial cross I'd sent away for... he won - I think. We both had a touch of food poisoning from a very famous restaurant on the wharf - (it's the big one on the right, you can't miss it... stay away from the shellfish and anything with tentacles.) And we visited Nancee's grave. It was raining, of course... it's always raining when I go there. It has never once not been raining, even in summer. And we spent some quality time with our older brother.

And I think this is why, for the first time in 32 years, I felt a bit of peace on the anniversary of Nancee's death. I have always felt her presence... as though I was being guided... and I believe that I was - that my compelling need to find my sister and brothers was not just my need, but hers as well - to bring all of her children together.

~ The First Anniversary ~

One year ago today, my mother died. My other mother, my second mother, the only mother I ever knew… the one I called "Mommy" - and still do.

I lit four white votive candles this morning and said quietly, "For you, Mommy..." and I felt my eyes get hot and the tears spilled.

I called my sister to see how she was doing... she'd taken a rare sick day from work and was at home - and was doing just so-so.

I have not felt my mom's presence at all in the past year - not the way I felt my dad still lingering and watching over me... not the way I've felt my first mother's presence and guidance ever since I can remember... my mom is just --- gone.

Gone. But not ever forgotten.