my father

So last night I did something I had been trying to bring myself to do for over 10 years. I called my biological father and spoke to him for the very first time. So awkward and yet so significant.

A little background is in order. I've know since I was a young child the specifics of how I came about in this world. Both parents were in the military. My mom was single, my father married with 2 children and, to hear my mom tell it, a bit of a smooth talker - the rest is pretty easy to figure out. When my mom figured out she was pregnant, she confronted him, asking what she should do. He was less than interested, mostly insisting that she not tell his wife, but otherwise wanting nothing more to do with her or with me. She had asked him what she should tell me when I got older and started asking, and he reportedly said "don't tell her anything about me until I'm dead."

So for about 18 years, this is all I knew of him. Married, 2 daughters, not interested in knowing me. I knew he was from Mississippi and that his name was Richard N***. I remember thinking when I was really young that he must be rich if his name was Richard - hah! I never really missed having him in my life. People would ask about who my father was, I'd say "I don't know, never met him," and it always led to a thousand questions on the whos and the whys and the hows. They would ask if it was hard or weird or what have you. It wasn't. I didn't know any different. I never missed it because I didn't know what it was to have in the first place. It would be a lie to say I never secretly envied, though. Most of my friends had very involved fathers. It always seemed like a special relationship - father and daughter.

When I was 18, I toyed with joining the Army. My mom was helping me get paperwork together one day before I went for my MEPS day. She gave me an index card with my father's name on it and his social security number - wha..??. She said she thought they might ask, and also felt I was old enough to now decide what I wanted to do with it. Turns out she had saved an old performance eval he had done (he was her supervisor) and it had his SSN on it. Within a few months, I had paid an online service to look up his address, phone number, criminal record, etc. Amazing how much info you can get with a social and $30! Nothing very interesting though.

For the last 10 years I've gone back and forth over contacting him. Do I, don't I, should I, shouldn't I? What if he rejects me? What if he denies it? Can I handle that? The most overwhelming reason why I didn't was because I knew he still had a family. I didn't really want anything from him, other than knowledge, so would it be worth it to cause possible discord in someone's family for that? Some would say yes, I leaned more towards no. Of course I wanted to know more about him, and I always had secret hopes that maybe he'd want to know me and maybe develop some sort of relationship - what little could be salvaged after almost 30 years anyway. But I would be risking learning nothing at all if I went about it the wrong way and his family was not accepting.

Enter ALS.

From day 1, doctors have been asking my family history, and many showing frustration at my only knowing one side (is that really *my* fault? no). It was then that I pulled back out the paperwork I had on him, phone in hand - ready. Couldn't bring myself to dial. My heart would pound, hands sweat, shake all over. Nope, thanks, I'll pass! Maybe later! My neurologist at Duke drew the test to see if I had the familial form of ALS and it came back negative, so I figured that I had a reprieve, for a while anyway. I could go back to my own time line and call my father when I felt emotionally ready (probably never, heh.)

I was accepted for a study at the NIH in February and, as a preliminary, had another neurological exam - basically a 3rd opinion on my diagnosis. Georgi and I were both shocked as hell to hear this neurologist say he didn't think I had ALS. He felt I was too "atypical." What he did think I had was a toss-up between 3 genetic disorders that fall under the category of distal hereditary motor neuropathy. The difference between those and ALS isn't much, and doesn't matter too much overall. Suffice to say, they were all autosomal dominant. So, I didn't pay much attention to the genetics portion in school, but it pretty much means I think that either it should be showing on my mom's side or my father's side, somewhere. Between this doctor and the genetics counselors, I was being pushed to call my father and find out - sooner rather than later.

As a side note in here - I really wish some doctors would think more before speaking sometimes. I understand the importance of finding out more about that side of my family, but it isn't as easy as just picking up the phone and saying "Hi Dad! I'm here! Tell me about you and your family!" Fuck. If it were that easy, maybe I would have had a date for a father-daughter picnic as a kid! Eh. It's just a really hard thing to do.

After much prodding from my wonderful wife, I finally did it. I called him first on Tuesday night. No answer and a generic voicemail greeting, but I left a message. Last night I decided to try again. His wife answered. Ack! Panic! I asked to speak to him, she asked who I was, I said my name, she asked where from - "it's personal." I could tell he was standing near her when I started asking him if he had been in the military, had been stationed at a base in Georgia in 1980, and had known my mother. He answered in a friendly "well, I guess so, sounds familiar," sort of way. Then I said I thought he was my father. In the same tone he said he didn't know what I was talking about. The tone changed dramatically when I said I had his SSN saved by my mother. Guess he knew I meant business. I quickly followed by saying I didn't want anything from him except medical information and why. He quickly cut me off and gave me his work cell to call him at the next day.

Guess the wife didn't know yet!

So I waited most of the day to call him, but finally did after lunch. My mom had prepared me early on to not expect much from him, so by doing so, I wasn't too let down anything. In fact, I was pleasantly surprised. He was nice, not overly, but polite. He would neither confirm not deny being my father, but essentially admitted to the real possibility and overwhelming likelihood. I apologized for disturbing things the night before and re-iterated that I didn't want to cause any trouble for him or his family. He asked about my mom and my life, and seemed pleased to know that my mom had raised me well. He lives in Mississippi, right near the Tennessee border, and works outside of Memphis. He told me about his family. He has 2 daughters, ages 32 and 39, and 4 grandchildren, a 16yo granddaughter (whom he and his wife are raising), and 3 others under the age of 5 I believe. He confided that they don't know who the father of the 16yo is, and said he can somewhat understand how that must feel for me, knowing how she feels. It meant a lot to hear that. I felt daring, as the conversation seemed to be going well, and asked if there was any chance he would ever want to find out for certain if I am indeed his daughter. He said it was too soon for him to consider that - his wife never knew anything and still doesn't. He said he had been up most of the night just trying to wrap his head around everything. Understood.

The kicker - no neuro-muscular issues whatsoever in his family. Both grandparents lived to ripe old age, his mother is still alive at 90, father died of heart disease, kids are healthy, he's healthy. Nothing close. Guess the NIH was wrong. Hello, again, ALS.

It's so weird right now. I have a voice with the name now. He said I could call him if there was anything else I wanted to know, or just wanted to talk - but only his cell during work hours. Heh. I don't know exactly what I hope for now. I want more now, I think. I want a picture, of him and my half-sisters. I want to see if there is any resemblance. I figure I'll call in a week or two and maybe he'll feel more receptive to it. I'd like to talk more, have him know more about me and me know more about him. Maybe in time.

My mom was happy to hear it went well, and pleasantly surprised. I love my mom. She never discouraged me talking to him, but always prepared me for the reality that it may not be all I want it to be. I couldn't ask for more. I honestly wouldn't change a single part of the way I was raised. It's made me exactly who I am today, and I do like me, finally. I don't know how things would have turned out if anything else was different, and honestly I wouldn't really want to know. It's just nice to know that I made the step, and that it wasn't too late to say I did it. Now he knows I'm here, and I guess the ball's in his court now.

Reality has hit home lately. A woman from the ALS support group we go to passed away this week. We'd only met her once, maybe twice, but it was still hard. Not from an attachment of any sort, but just as a smack in the face that this disease is more real than I've been letting myself believe. She had been diagnosed in 2006 I think with bulbar onset. She wasn't trach'd, and it is my guess that it is something she chose not to do and therefore died from respiratory failure. It made me look around the room there. Everyone else is bulbar onset as well. I think myself and one other person may be the only limb onset. There is one woman, Lucy, who makes me laugh endlessly. She has such a sense of humor about everything, but each time I see her, I understand her speech less and less.

Another sign of progression.

Another sign of time running out.

eight.

We are now 6 days into the new year. It's funny. There are many instances that I've experienced throughout my life that I know, at the time, I said I'd never forget. Well, I don't remember what they were right this minute, but I'm sure they happened.

What I can say for certain is that 2008 is a year I will never forget. There were good memories and bad memories. There were even some in between memories. For a few moments in writing this blog, I tried to list these events, and to no avail. There are simply far too many.

I fell in love with my soulmate in 2008, although truth be told, I was probably in love with her before. It made the early days of the year a very confusing and stressful time. There I was - straight, married, stable - stagnant. There she was - addict, unemployed, not very stable. The crazy thing about love I guess is that you don't see the things that other people are telling you to watch out for. It's blinding, and, I think, for good reason sometimes. Without being blind to all the reasons why maybe a relationship isn't a good idea at a particular time, one may never ultimately see how wonderful it could end up. The nights spent worried over whether she'd actually still be there when I got home in the morning faded with time (and meetings) to where my only worry now is if she was able to get a good night's sleep while I'm gone. The time spent re-emphasizing a sponsor's words that working on recovery was time well spent and working for money would come eventually culminated in steady income and a beautiful house. I guess you could say we both dove in head first and never looked back. 1 year later, we're married, planning a formal ceremony, and I should try finding a good pregnancy bathing suit.

I learned a lot about myself this year. I'm more stubborn than I knew I could be. More selfish at times. And more often than not, less willing to make apologies for it. I spent a while not being true to myself, my wants, my needs, my desires out of life. It was so easy to say that I did it because I was in a relationship and that means compromising. But how much was too much? I've spent the last year rediscovering myself, and in such little ways, too. I don't limit my musical interest. Who really cares if I leave the house without make-up on? No one really notices that roll on my tummy as much as I do, and if they do, they certainly don't care as much as I do. There's nothing wrong with choosing to wear slacks instead of a skirt. I wash my face meticulously these days and don't really give a shit that I've lost my retainers. I can sleep until 2pm without feeling guilty - even if I didn't work the night before. I'd rather save money in the short term to enjoy my time now than save over the long term for a day and time that may never come. I'm not as worried about having people like me. I don't drink anymore and I think it has been one of the best decisions I've ever made. It was almost bad. Scratch that. It was bad. It was almost worse. To say I quit just in time is probably an understatement.

The worst part of 2008 comes in 3 little letters. A. L. S. I could have gone with just being a hypochondriac. It really sucks that the moment I feel like maybe I've accepted this and am ok with it is the second I realize I'm still as scared as I was the day I was diagnosed. Every little bit of good news still comes with a footnote that reads, "we still can't tell you anything for sure." I know that no one's life is certain. I know that one day I could walk out of the house and be struck by a car. I know that things could happen. This is different. This is knowing that it will happen, but having no idea when or how. I still try not to get frustrated with Georgi when she wants to look at or talk about handicapped vans, or stair lifts, or speech machines. The truth is it's not even her I'm frustrated with. I'm frustrated with that future. I don't want that. I don't want to know that that's what may be coming, whether it comes tomorrow or 10 years or 20 years from now. I used to think maybe this was better than waking up paralyzed one day - at least we can plan this, right? That should make it easier, right? Wrong. So wrong. I am definitely still very emotional about this, no matter how much I try to go through the day saying I'm learning to accept it. I still want to punch co-workers for wondering what's wrong and why I'm not acting like my chipper self. Seriously? You know what's going on with me. Everyone does. What part of you thinks I'm not entitled to more than a few days when I don't feel particularly chipper? Where maybe I'm just in a bad fucking mood? Because while they can all have hopes and dreams still of living into their 80s or 90s and all that comes with another 50 years of life ... well ... lets just says, save for a miracle, the odds are not in my fucking favor.

Pardon my outburst.

2008. Good things. Growth. ALS. Some bitterness.

At least I found my soulmate. She doesn't take it all away, but I can lay my head on her chest and fall asleep - happy.