Making Sense of May

So May. Here we are again. 

I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.

Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.

my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 

my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 

By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.

       

Jersey Lament

from Tuesday, 10/30

I type by the light of 2 battery “accent lights” from a 6 pack I got at Costco on Saturday, my back vaguely warmed by the sea of candles lighting the rest of my first floor. I cannot even upload this post, since we are without power, like most of New Jersey, and without power, I have no wireless internet…but I still have some computer battery left…so here I am.


Hurricane Sandy was, for us here on my street, a big storm punctuated by four hours of Really Scary --think 40 foot willow tree bending sideways in my yard as we heard pieces of our house peeling off. We lost power about 8 p.m. on October 29, just after the storm made landfall far to the south of us, near our beloved Cape May…where my onco kid conquered her exertion anxiety and climbed all 199 steps of the famous lighthouse just this past June. Within an hour of the power loss the winds picked up, the air sounded like a freight train even from the safety of our candlelit living room. From our somewhat protected back deck we could see the sky lighting up as transformers and wires danced explosively. The sound of it was something I have never really experienced before….


And we are miles and miles from the nearest coastline.
This morning I was afraid to look out the window…but in the breezy stillness and light rain I could see that the willow, while maimed once again, was still standing. We lost 2 gutters and 3 pieces of metal trim literally peeled off the roofline of our house (the longest twisted piece of metal is about 7 feet long)…but aside from that, and a carpet of branches, we were remarkably unscathed. Our entire neighborhood was remarkably unscathed, one dead tree had fallen in the space between 2 neighbors’ houses, but that was about it.


The three gourds someone lined up on our deck railing remained in a neat row this morning.

We are so lucky.

My spouse went out in search of coffee and a real bathroom (we have well water, so no power=no water, and only late this afternoon a neighbor with a generator hooked us up to their well so we can at least flush toilets and wash hands), and saw the extent of the damage near us…trees down everywhere. Wires down everywhere. Houses hidden by fallen trees. Poles and wires tangled and blocking roads. It’s a mess. We found out that a good friend who lives about a ½ mile away had significant damage to their home and property. My work (a school) had 14 trees down on the campus, and the streets around it are impassable because of downed utility poles. Friends around the country were texting me, but I could hardly get my texts to go out, the networks are overloaded here or something…

And then we managed to find some radio coverage of what was going on…

Our poor New Jersey got flattened.

Being disconnected from information NOW is so frustrating, so deeply frustrating. See, Jersey is a really small state. Freakishly small. So when news reports talk about Hoboken or Jersey City, we remember when we went to dinner there…or a reporter stands on a windy beach in Point Pleasant, my youngest remembers when Daddy got to chaperone her class trip to the aquarium there…or the camera pans to Atlantic City, I think of the fun I had with my sisters on my 40th birthday trip there, or how I went there with a friend on my first grown up vacation when I was barely 21. Seaside Heights? My first NF Endurance race. Lavallette? Where my parents vacation every summer. Newark? Great time at a Devils game, or where my girls got to see Taylor Swift in concert. Hey, that reporter is right by where we did the Polar Plunge for Camp Sunshine last February!


Jersey is small. If somewhere is on the news, unless it’s the far southwestern portion (that’s a tad less accessible to northern Jersey folks), we’ve been there, and generally had fun there, or we have friends who live there, or a neighbor works there….

Sigh. Sandy threw a smackdown on our neighborhood, both locally and our little state.

Getting specks of information, not being able to get cell phones to connect, not seeing what is going on…knowing that all of our favorite places are not just struggling but likely obliterated…it’s appalling and frustrating and scary.


I know we are tough here, it’s what Jersey is famous for, in some respects, that “fugghedaboudit” attitude that is so easily parodied. But under that, just like under any tough shell, is a deep love for this crazy little state. We accept being the punchline of jokes because we know the truth about the gems that lie just beyond the famous Turnpike. We know that we have invented all sorts of unique and impressive forms of corruption here, of double dealing, of stupid laws, of personality stereotypes, of insane home prices and cost of living, of food (ok, our food is awesome)…but beyond ALL of that ridiculousness, we love this place.


I know I will cry when I finally see the pictures, the pictures of this state I love, this state I call home. I don’t have it in me (in the dark of my powerless house) to burst into inspirational song about triumph over adversity…this one hurts. It does. The scope of this is so huge, and our state is so small, it’s our home, every corner of it is kind of in our backyard.

But we are Jersey proud. And we will get through this, even if it seems sooooooo clichéd to say that right now. So Sandy…we know you threw your best at us, and you knocked us down, and yeah, you flattened us…but are we going to just lick our wounds and hide in the Meadowlands with Jimmy Hoffa somewhere?

Fugghedaboudit.