Of Lent and Loss

This is too long, again. I shouldn’t write within 96 hours of looking at brain scans full of tumor, but that is when the Words Need to Come Out so I don’t go all Violet Beauregard and risk popping. You all are better than therapy. No joke.


So it is Lent again, and I can’t help but think “LENT” in sort of the same way that Jerry Seinfeld used to say “Newman….”.

Over the last few months especially I’ve been plagued with a deep sense of loss and a nagging sense of the passage of time. When you have 5 years of precarious stability and that feels like a heartbeat in the face of restarting treatment, time takes on new meaning once again. Five years was nothing, and at the same time so much MORE than what many of our friends get.

Plagued is the best word for it.

Since the new year I have been trying to make sense of the ever growing moments of loss that just keep showing up… loss of trust… loss of honesty … loss of joy … loss of hope on fronts OTHER than brain tumor… loss of hope on that front too, some days … loss of relationships… loss of excellence (or the hope for it, more accurately) … loss of camaraderie… loss of dreams…

Some of these things are in my own home, some are due to our medical situation, some in the places I go each day in normal life, few of them are within my control.

As a Card Carrying Control Freak, this list makes me lose sleep daily, because I NEED to control them. Ahem.

Maybe for Lent I should just be a hermit. I could move rocks around, and control my little cave or yurt or whatever…

I have tried to be a rock and an island (which of course feel no pain and never cry), but that hasn’t worked out great, because I am plagued by honesty, too. I can’t be fake. I have tried throwing myself into things 150% only to find that ultimately, it is a 150% that doesn’t heal the losses that follow along our 8 year path like vultures.

Hey, it’s Ash Wednesday, and I am Catholic, you’re gonna get extra gray and dismal today, what can I say? And I drove under trees full of vultures yesterday on my way to work. Ugh.

Although honestly, this plague of loss and time have been with me for a while, just the last 6 months or so have brought everything into stark light.

And as we lose things, some of which can’t be regained – some of which are so deep I can’t blog them here, even though I wish I could just be honest and yell out the hard truths we’ve come to see over the last several months (both me & spouse—it’s a family plague, nothing brings a family together like a plague)…at the same time, I feel like time is racing on, and the opportunities to regain lost ground or at least find a new ground to stand on are slipping by.

Ashes to ashes and dust to dust…

(says she who hasn’t been to Ash Wednesday Mass in years. The ash thing messes with my Extreme Need for Personal Space, alas. I think you miss the spiritual benefit of that Mass if you are crawling out of your skin the entire time. But don’t worry, I feel appropriately guilty about it, even if it’s not an HD of O).

For us, our daughter’s diagnosis in 2004 was a massive earthquake, a 9.8 on the Richter scale (subsequent events got us to 10, but whatever). In the immediate aftermath of diagnosis we tried to continue with all the things that had anchored our life to that point—family outings to baseball games (where of course our daughter fell and hit her head 2 weeks after brain surgery), Rutgers homecoming (where she had a massive OCD freakout and tried to pull away from us, screaming and crying in a crowd, so she could “re-walk” a piece of pavement until she got it right), prayer group meetings (where I sat outside the main meeting room with a jacket spread on the floor so my daughter could lie on my lap)…we tried so hard.

I tried to keep writing, we tried to do service things with the prayer group we were involved with, I volunteered at my son’s school, we tried and tried to hold on. And for a while we did, even through some really dark times, even through meetings at school where people asked how our daughter’s frantic behavior should be addressed as a character issue, through endless days with G coming into our bedroom at 3 a.m. because she felt horrible, of the constant stress of never knowing if her counts were going to bottom out and we’d be racing back to our hospital 2 hours away for more transfusions, of our other children sleeping in our room every night for 2 years because they were afraid we’d end up unexpectedly leaving for the hospital.

Every night. For 2 years.

PTSD is real, people.

And so many people helped us, in the first 3 months of G’s diagnosis I never cooked (I didn’t eat much, either, but that’s another story), my mom’s friends fed us for months, when G couldn’t handle her 1st grade classroom a group of ladies from our prayer group volunteered to come in each afternoon to work with G one on one…every day…for months. Three of my friends who later died of cancer made a point of sending G cards regularly when she was on chemo, just encouraging her because they knew how it felt (Nora * Denise * Marge) . I will NEVER forget those acts of kindness. Not ever.

Since the darkest days of 2006, our world has been rocked by aftershocks of that first initial earthquake…moments that rattled our foundations. So many things we thought were true, we now know are NOT true, or at least aren’t as plainly true as we always believed. The fragility of life trumps everything, and we hang out in circles now where we see that our earthquake was only one of many—so many families bear these losses and these pains.

The aftershocks continue, and every time the dust settles I see another loss. Most of our closest friends/family don’t live here anymore (I am so grateful for my family, who, despite our distances, somehow manage to stay close), and I don’t know how to bridge distance very well. Some relationships have been irrevocably damaged because of a loss of honesty…and that can’t be fixed. In the last six months I have come to realize in multiple situations that if someone cannot acknowledge that they are being dishonest —maybe they truly don’t understand, which is mind boggling to me, how can you willfully not try to understand things?--, if this is the case, you can’t fix things… it’s a philosophical concept called contradictory diversity—and you lose. Everyone loses. And the loss of relationship is always a sad loss.

There just isn’t anyone to TALK to about things (hence the Miserable Manifesto here), I am no longer at a point where I can randomly join a nice group of people and unload my trunkload of woe on them. Talk about junk in the trunk…yeeks.

Despite the way we raised our kids (or tried, before diagnosis and in those early years), not all of them always make decisions we are ok with (understatement of century). Seeing THEIR wounds (again, especially in the last few months) just rattles our world again and plagues our sense of having anywhere secure to stand.

So when we roll around to Lent again, a season of sacrifice and penance, I just don’t have a lot left. Yeah, I can give up chocolate (not gonna happen), or coffee (you don’t want THAT to happen) or do all the little food sacrifices I used to so scrupulously do when I was younger…but now I’m not sure any of them mattered. Did they make any kind of spiritual difference? Did they bear any lasting positive results? I think this Lent I want to try to do positive things to at least find some footing amidst the aftershocks.

I need to try and forgive. And I don’t know how to do that, when it’s years and years of hurt, how do you do that? But I have to try. And I have to make peace with our losses. I have made peace with my daughter’s illness. I have. It is what it is. But I am not always at peace with what this illness has cost her. This I am reminded of a lot recently. This illness has cost her so freaking much. And she is just a kid. I need to try and make peace with this so I can best help her be the beautiful young woman she is meant to be—even if that isn’t the same as most other 14 year olds. I need to make peace with that.

This morning we put out a little candle and said a short prayer with our girls (our son leaves early for school, and it’s never pretty getting him out the door). This is a teeny tiny first step—not that I think God Will Send Downeth His Mighty Hand or anything, but it’s a little Lent thing we used to do, a little foothold, a moment to focus at the start of the day and not let the earthquake drop us before I even get my second cup of coffee. I did a quick 20 minute workout again, which hasn’t happened in the last few weeks more than once because of work (I spend 2 hours before going into work every day working at home)—I have to prioritize my health again. I will TRY to spend a few minutes a day nurturing connections with people. I will keep Christmas the whole year through…

Oops, got carried away there.

I know these things won’t make the losses go away, the losses of so many of our family’s hopes and dreams. But I hope if I will myself past the paralysis of cumulative loss and try to dive into the time we DO have (instead of just clinging to the good things—I want to embrace them and drink them in), maybe I can find some footing again, and help my spouse find HIS footing, and hopefully find solid ground amidst the aftershocks.

I know that a lot of folks who read here might have insight on this. Where do you find your footing amidst the aftershocks of bad stuff in life? How do you let go of the things you can’t fix (and I don’t just mean medical catastrophe)? I have tried so many things…

How do you forgive? How do you forgive when the folks you need to forgive seem to not get that there has been so much wrong done? Really, these are not rhetorical questions…what do you all DO?  Heck, how do you forgive yourself for not being able to spare your children the wounds that come with catastrophe?
No joke, the hermit thing is looking like a viable option, if someone is willing to take the dog out every so often while I’m in my yurt…

Thanks, all…

And next time I promise, I will reference a sparkly unicorn or something. ;)