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October 14, 2004 ~ Hate Mail, Leaving
Thursday.
"You know, for such a supposed environmentalist, and someone supposedly concerned about social issues, I'd expect differently from you. What's the matter with adopting? You couldn't love a child who doesn't share your genes? Overpopulation and all the parentless children out there, yet you want to have a child with your screwed up genetics? Nice. MS sucks, thanks for sharing it!"
~ posted by "like Id tell you" in the guestbook.
Morgan's mother called us last week. She'd had a few consultations with a multiple sclerosis specialist in Charlotte. She had some good news. First of all, the specialist believes that Morgan's mom has a very mild case so far, and he knows that they caught it very early. He is putting her on a treatment plan with some new drugs that he believes will keep her multiple sclerosis in check, so that she will not have any further attacks. She may very well be able to live a normal life, since they caught it early, and hers hasn't been too severe.
Now, it's not a cure. There is no cure. And it means injections every day for the rest of her life. But she should hopefully live a fairly normal long life, without becoming disabled, if the treatment works. Things are looking a lot better for her than they were a week before.
Morgan's brother's case, unfortunately, isn't so treatable. But that's the thing. Everything we've read and heard makes it obvious that there is a wide variation amongst MS cases. Some are mild. Some are severely debilitating. Some are treatable. Others progress rapidly and don't seem to respond to treatments. It's impossible to know if you have it or if you will develop it until after the first attack. It's impossible to tell if you will pass your genetic predisposition for it on to your children until they get it.
So far, no one has been able to prove the exact genetic connection, though most agree that it does have to do with an inherited predisposition toward the disease at least to some extent. There is no one MS gene or group of MS genes. From what we've been told and what we've read, Morgan has anywhere from a 5% to a 60% chance of developing MS. It all depends on whom you talk to. Some doctors argue that just because it tends to come up in the same family does not mean it's hereditary. Families also share the same environment, the same air. Perhaps it is that. Some theorize that a virus triggers it when one has a genetic predisposition.
No one can really tell us what will happen when Morgan's genes interact with mine. No one can tell if perhaps the different area we live in, the different air we breathe, will be worse or better for preventing MS. Some will say that we may not want to have kids, due to the increased risk. Others will say that the risk is so minimal we shouldn't even consider it a threat. There is not enough known.
While Morgan's mom was with the specialist, she talked to him about genetic predisposition. She talked about the warnings that we'd all heard about how likely Morgan is to develop MS. And she talked to him about how Morgan and I wish to have children, and she asked him if he thought Morgan would get it and if he would recommend children for us or not. He is one of the top specialists in the country for MS, and she really wanted his opinion.
The specialist said that it would be ridiculous for Morgan and I to refrain from having children. He believes that when thinking about having kids, Morgan and I "have plenty of diseases to worry about that [our] children are more likely to get than MS." He said that Morgan does have a higher statistical chance of developing it than most people do, but he believes that Morgan's chances of getting it are pretty slim. He said that while there is some hereditary base for a predisposition toward MS, he doesn't believe it is strong enough to shy from having children.
Now, I know that other doctors would tell us differently, but his words did give us hope. Everybody disagrees. It all boils down to hope, though. We have hope that our children will not be affected. We have hope that even if they do end up with MS, new treatments will be available to treat it, and with new research, maybe even a cure. And even if they are unlucky enough to have an untreatable case, they will still have a lot of living to do. If you think me an idiot for having that hope, then so be it. Frankly, I don't care.
You are right about one thing. MS does, indeed, "suck." It means a life most likely shortened, a life probably painful and disabled at the end. But I have known some amazing people with MS who have lived extremely full and rewarding lives, despite the pain and disabilities that MS brings. I simply cannot agree that they should never have existed. I can relate; my endometriosis has caused me incredible pain, and it has held me back from some things that I would have liked to do throughout my life, but would I rather have never existed? Hell no.
On adopting. There is absolutely nothing wrong with adopting; I have looked over all of my entries concerning this choice, and in none of them have I said anything even remotely critical of adoption, so I'm not sure where you got that impression. Morgan and I, in fact, plan to adopt if it turns out that we are not able to conceive due to my endometriosis, or some other unknown factor.
That we are attempting to create children naturally has nothing to do with an aversion to adoption; I would love an adopted child just as strongly and fiercely as a natural child, I feel sure. Rather, Morgan and I would love to have the experience of creating, through our love for each other, another human from ourselves, a little of each of us mixed into a new unique person. I have felt, since I have been very, very young, a strong desire to be pregnant, to carry a child, to give birth, to breastfeed--to experience natural motherhood in its entirety. It feels like a calling to me, and I would have an extremely hard time ignoring that urge. Morgan and I both feel that creating a child is a life experience that, if missed, we would mourn.
I believe, to some extent, in destiny. I walk in a certain harmony, and my heart helps me discern the path that I need to take to continue in harmony, rather than step off into discord. There have been times in my life when I knew to my very core that I had to choose the right path for me. Leaving my home and everyone whom I loved to join with Morgan here in North Carolina was one of those times. Creating a child with Morgan also has that same pull, and to step away from it would be discordant.
Like I said, there is always adoption if we try and fail, but first we want to try.
Not to mention, one can hardly hope for a genetically perfect adopted child, either. We are all of us flawed, in one way or another, and some of those flaws may pass on to our children. I wrote a thesis on dystopias, and I find the implication in your comment of eugenics--hereditary improvement of the human race by selective breeding--disturbing. Were all of our parents required to pass a genetic test before they could procreate... Well, most of us wouldn't be alive today, that's for certain.
As to my commitment for caring for and healing our environment and my concern for social issues, my life is laid out here before you to peruse. Think what you will. I am confident that I have remained true to my heart and my goals, and a person who reads a few entries and thinks he or she knows me and furthermore feels the authority to publicly denounce me without even revealing his or her own identity, lifestyle, or personal choices... well. That person shouldn't feel too disappointed when I don't take his or her criticisms too seriously.
Morgan and I have discussed and agonized and cried over our decision to go ahead and have children despite the possible risk. It has not been an easy choice, and by no means are we taking it lightly.
I got the sense from your comment that you don't know me very well, or know the background of this decision very well. For the record, here are all the entries that talk about it, though be aware that they certainly don't cover everything thoroughly:
February 1, 2003 ~ Menstruation Liberation (background on endometriosis, though not in relation to fertility)
October 18, 2003 ~ Difficult Decisions (endometriosis and fertility, grad school vs. kids)
October 20, 2003 ~ The Cards We're Dealt (a decision to wait on children, which didn't last long)
October 26, 2003 ~ A Change of Plans (new possibilities)
November 22, 2003 ~ Fading Light (cloaked hints)
December 8, 2003 ~ Down the Drain (more cloaked hints)
January 30, 2004 ~ And Greif Comes Wailing (another failed attempt, thoughts on infertility)
February 2, 2004 ~ Fear and Fragility (more on the subject of infertility
September 23, 2004 ~ Doomsday Prophecies (MS in the family, considerations about having children)
September 29, 2004 ~ Diagnosis Confirmed, Choices Made (deciding to have children despite MS, reasoning behind that decision)
Within twelve hours of receiving the above guestbook message, I found that someone had stolen one of my photographs, claimed that it was one of his "artistic shots," and had posted it on the entry page to his photo gallery. (Which, I would guess, is probably composed of several stolen photographs.) Not only had he claimed my photography as his own, he had hijacked my server's bandwidth to do it, by "hot-linking" the image. Which means I was paying for this thief to steal my art.
An anonymous user on an anonymous free server. Anonymously stealing. Copyright infringement and stealing hosting space is still illegal, even if you're anonymous, though. You're still a thief.
Please. If you like my photographs, please respect me enough to ask my permission before you use them. Give me credit for them. And don't link to anything on someone else's server without getting their permission. You are stealing server space that they have paid for if you do.
The internet affords us the ability to hide behind anonymity if we so choose. Please, please, though, if you're going to be anonymous, remember that those whom you encounter are complicated, real people with feelings that can be hurt. Stealing my art will hurt me. And saying things of a disrespectful nature to me in my guestbook just because you don't have to show your face to me, that hurts too. I'm more than willing to hold a dialog back and forth over e-mail, or another interactive medium. But posting, publicly, judgmental and negative statements about my character without leaving a way for me to reach you is heartless and selfish.
And while I'm at it, I'd like to address the anonymous hotmail user (you know who you are) who wrote in to tell me that you are glad that Morgan and I are having some trouble having children because you are loathe to see a poor innocent child raised with such horribly liberal parents, and what an awful environment that poor child will be in, etc. I was not aware that liberal parentage is considered child abuse! Wow. The things one learns when one keeps a journal online.
Like how mean-spirited some individuals can be when they don't have to show their faces.
Morgan took this picture on our hike a few weeks ago
What I wanted to write about today was that Li, Morgan's and my old housemate, is back from China and visiting us here in Asheville for the next few nights. We've missed her, and we're going to pack as much visiting as we can into three days. She'll get to meet the wolves she's been reading about for the last year, too!
And then we leave for a week of visiting Morgan's family and the North Carolina coast. We are very much looking forward to the vacation, and the time together. I won't be updating, though I will have chances to read my email and possibly send out an email-only entry via the notify list.
I just wanted to say thank you to those of you who have been so supportive and understanding through all of the upheavals that Morgan and I have been dealing with in the last few months. You are the ones who remind me, repeatedly, of why I started writing here in the first place.
I wish I could leave with a more uplifting entry. Know, though, that Morgan and I will be spending a week with the people we love, and we will be exploring the beautiful Outer Banks alone together, spending some time to recharge. And boy do we need to recharge.
the drive to work
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