Sunday, March 3, 2013

Wrong with Me

I whined at my husband yesterday, asking him, "What's wrong with me?" He hesitated, "Can you rephrase that, please?" So I said it louder. Apparently, that wasn't what he meant because there was a longer hesitation until he said evenly, "How about no nap for the little ones so we can put them to bed earlier, drink a pot of tea, and you can tell me what's going on. I'll be home soon." Yes, I said this on the telephone while he was at work.

See, the past few weeks have handed out some tragedies: two little boys and a young mother, all with CF, passed away, and our beloved Holy Father has resigned, leaving the seat of Peter empty. Other ladies I know are typing out expressive, passionate posts of drama and beauty and anger and fear and I just feel . . . quiet. A general melancholy, like I have no energy. "Do you think I'm cold-hearted?" I'm pretty sure I saw the corner of his mouth twitch, suppressing a smile, but Ken assured me that I was not; indeed, that nothing was wrong with me. "You don't have CF shock anymore. You have more of a tough sadness; not that you don't feel, but that you don't fall apart easily."

Well, that was a thoughtful explanation and all, but in the wee quiet hours with Addie, I wondered why. How did I get to be this way?

When Rees was first diagnosed, we had just moved 5000 miles away from the east coast: I was all alone, with no family and only a few new friends. There was no one to cry to or yell at or study with; no one to help with clapping or medications or nebulizers (There were two couples that were priceless angels for us during hospitalizations, thanks be to God and all the saints.).

Also, we were part of a church denomination that believed in divine health, so any inklings of doubt or fright or weakness were shushed. Don't speak it, they pronounced. The slightest shimmer of a tear was waved away. You must verbally claim Rees' healing, they commanded. This sort offers help by coming over and taking hold of the child and parents, praying with much shaking and shouting and demanding of disease demons to be cast into the pit of hell. Even in the solitude of our home I was terrified to let any negative emotions spill out, for fear that God would know how small my faith was, thus thwarting a healing. I didn't vent much to Ken for the same reason (I only recall two times in 9 years.). So I kept steeled and quiet and wondered what was wrong with me.

When Rees was around two years old, I happened upon some books written by a mother who lost her children to CF in the 70s, Turn it into Glory and Following Joey Home; I read them over and over, stifling sobs and physical sickness. Ken wondered why I would read such things and I remember telling him, "I have to. That's it."  The author, Meg Woodson, was the only CF Mama connection I had, as we would not have a home computer for years still, and Facebook groups hadn't been invented yet. So I kept sad and quiet and wondered what was wrong with me.

I think that being solitary and overwhelmed with a scary diagnosis involving extra work and hospitalizations; a false gospel turning us against each other, our own selves, and God; and immersing myself in Meg's aching books is how I got to be this way. What's wrong with me, is that sadness doesn't shock me because it's deep inside me and always present.

I write this post for three reasons: (1) catharsis, (2) solidarity with similar others, and (3) understanding for friends of similar others (Go easy; they're probably not cold-hearted, either.).

I'm so terribly sad for the sufferings of cystic fibrosis and the suffering of the loved ones left behind and I will miss my Church Papa very much.  This thoughtful, well-footnoted article explains the Church's teachings on redemptive suffering, which brought me back from the theological cliffs of despair; a lively Facebook group of CF Mamas offers plenty of tears, laughter, and understanding to make up for all the lonely years; and smart, loyal, loving friends walking beside me on our journey ~ these are good gifts. Praiseworthy gifts.

What's wrong with me? Nothing that the Communion of Saints can't help. And a really nice husband.

Can I get an Amen?


  1. Amen!

    I have that tough numbness too. Only mine is the JRA variety. There is nothing to strengthen you like having a sick child. The hard part is to not be calloused and hardened to life.

    When you figure it out, will you let me know how you did it? Thanks

    1. Well, I do sink into hardness occasionally, holding friends at arm's length and internally snickering at their (what I see as small)troubles. Re-reading Catholic theology helps. Really. I'd love to say that my heart and mind heal when I attend Adoration or spend some holy hours in the tabernacle chapel, but I never get away to do that.

    2. Yes, I think the one thing I'm still constantly working on is my knee jerk reaction to well meaning people's attempts to "relate" to my struggles.
      I just told my husband the other day, I think I've become the type of person who can't see anything less than SMA (or something of that caliber) as a crisis. I really have to work to sympathize with other people because I know what they're going through is a huge cross for them, even if it seems like nothing to me. And I felt horrible admitting that, like it was an admission of poor faith or something.

  2. Amen. - I have that deep and constant sadness but for a different reason. I'd been wondering "what's wrong with me" every time I see people getting all emotional about the Pope leaving.

  3. The way I can relate to this post is through my work as a prison nurse. Over the last year, I have found that I have developed a hardness that I didn't have before. It's a wellspring of sorrow that is based in knowing a reality that I didn't know prior to being there.

    1. Somehow we can have a wellspring of sorrow that doesn't ruin our lives, aye? I can see it as a gift but I would give it away in a second for a cure.