It’s not the only disease
Wednesday September 11th 2013, 10:07 pm
Filed under: Friends,Life,Lupus

On my way there I said a prayer for every member of our group, the ones who come, the ones who don’t, whoever might show up. I figured we could all use such good thoughts anyway, so, yeah.

She’s said it to me before in private. I was shocked speechless at both the words and the fact that she slammed her heavily damaged, arthritic hands to make her point as she said them: pain on pain.

But this is the first time that I know of that she said it to the whole group.

Lupus Support Group, Conference Room B. There were eight of us today. Six are mothers and one clearly, from things she’s said, would have liked to have been.

And then there’s M.

M fiercely believes that we could eradicate the scourge of lupus once and for all–not by research, not by medical advances, one of which we had just been discussing, no, what she said was, if lupus patients would just STOP. HAVING. CHILDREN.

And right there next to her as she fiercely derided most of us was me on one side, mother of four at the time of my diagnosis, and MK, likewise with her grown four and with her sweet three-and-a-half-year-old granddaughter in tow. Who’d been charming the socks off everyone, including M. I hope that little girl didn’t catch on that her grandmother was being condemned for her very existence.

The kicker is that lupus is not actually known to be genetic. The susceptibility to it seems to be inherited, but not the disease itself.

The others were taken quite aback but I’d heard it all before, so I smiled and responded gently, “Actually, I think lupus is what I needed to grow up.”

And I went on to describe how I had learned to be more the kind of person I wanted to be, kinder, more compassionate, more aware of others’ needs, because of the things I’d gone through via illness. (The stories I could tell! The people I would never have met but for…Like right here in this room, including, yes, her…)

I bragged on my kids by quoting Mrs. Russell, who had taught them all in elementary school; she’d taken me aside one day, well after my diagnosis, and told me that my kids were more empathetic to those around them, kinder….

The lupus, I said, had played a part in that.

“We all have something,” I added.

Another woman nodded, “The seeds of our deaths are in our births. It’s part of life.”

Another woman gave her own example of why it was okay to have had to go through all this.

I picked Richard up from work a few hours later and I was still struggling not to steam over the cluelessness of the woman’s unfathomable insult. I honestly don’t think she knew she was being insulting, though, and it was clear she was incredibly lonely, in too much pain to see beyond herself, and though she would never agree, it was very clear to me that in her old age she deeply regretted not having had children. That lashing out was her only way of dealing with it.

She needed a friend, not someone who took it personally and got angry back. (Rereading this draft before hitting publish, I feel that having written that out loud after these hours have passed, I am finally free of it.)

I hope what I said helped. I do know that I said it better in the moment it was needed than I of myself could have done, alone.

8 Comments so far
Leave a comment

I think she may have realized that she is alone, and has no one to care for her, or for her to care about. It could be the reason she is so bitter.It seems to me when you have someone else to focus on while you are ill, it seems to shift the problem from being you having an attack to how some else needs you,

Comment by Kris 09.12.13 @ 5:57 am

Of course, not having children is one way of eliminating EACH AND EVERY human health condition, ’tis true, when followed to its logical conclusion. Yes, we all have something, eventually, if not an inherited disease, a weakness, or accident or other damaging life event. I think her pain means she doesn’t want any one suffering the way she has.

One of my cousins (a second cousin) was the only healthy kid in her family which was also hit by other tragedies. Her one wish for her young son years ago was that he’d have “a kind heart.” She got her wish — and if such a thing is inherited he got it from his single mother! And her healthy son has made her a happy Gramma recently. Maybe people with “unkind hearts” shouldn’t have so many children (I add only sarcastically….)

Comment by LynnM 09.12.13 @ 7:53 am

I’ve known you for many years now, and you are certainly the kindest, most compassionate person I know. I’ve met your two daughters but briefly, and they both strike me as having “inherited” those same traits. It’s hard to be angry at that lonesome person, but she does have some learning to do.

Comment by Donald Meyer 09.12.13 @ 9:16 am

Lynn and Don said it well. Sure, we could end EVERYTHING by not having children. Gah. But thankfully, there are kind souls like you who pass along their best traits to their offspring, and the world is better for it.

Comment by Channon 09.12.13 @ 9:39 am

What exactly did she want you to do with the children you had before your diagnosis? Yes, not having children would keep those not-children from inheriting diseases. So would wiping out humanity on a global scale. Fortunately the “let’s kill us all so we don’t suffer” idea doesn’t appeal to many people.

Comment by LauraN 09.12.13 @ 10:51 am

I have heard of it as a help to eradicate haemophilia, but with some other diseases, as you say, that is a breathtaking leap. As you set as an example, some of the ‘problems’ that we have aren’t genetic, and sometimes that would be a questionable decision.
Where would we stop with genetic ‘problems’? Is a squint enough to stop having children? Who is going to make the guidelines?

Comment by StellaMM 09.12.13 @ 5:28 pm

Poor soul. Kind soul, you.

Comment by twinsetellen 09.13.13 @ 5:44 pm

Ouch! You handled that better than I fear I would have done

Comment by Ruth 09.13.13 @ 7:29 pm

Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>