Category Archives: Love

Life’s little surprises…

It feels a little redundant to say life has been difficult lately. Is there anyone I know who couldn’t say that? Everything is turned upside down by the pandemic and it feels as though the whole world is holding its breath and hoping the great orange asshat doesn’t blow us all up by inadvertently sitting on the big red button. Still, life has been difficult lately.

I’ve been struggling. Really struggling. The kind of struggling no amount of Pollyanna-ing can get you out of. The kind you just have to sit around with until you acknowledge it enough you can move on.

I’ve been in a bit of a funk, one might say.

Then my husband gave me a box from my mother in law.

I knew what was in the box, it was a quilt. She makes these lovely quilts for people who are struggling and I love seeing her quilts come through the house as we help her spread her love around the world. It was strange that he would bring one upstairs but ok, cool. I knew it wasn’t for me because she has already given me an absolutely stunning comfort quilt that I curl up under all the time. While I would cheerfully hoard all the quilts in the world I try not to be greedy. I know how much work they are to make and I know how many people could use cheering up.

His face was weird. He was up to something.

I opened the box. There was indeed a quilt in it. I said something like “Who’s it for?” and he answered something like “It’s for you.” I told him I already had a comfort quilt and it couldn’t be for me. He told me it wasn’t a comfort quilt.

And that’s when I pulled out the lovely fleece backed quilt, saw the messages and signatures from my family and friends, and promptly scared the life out of my husband by bursting into tears and burying my face in his chest.

I cried for a while. Kind of a long while.

You see, there were several things going on in my non-verbal head at that moment. One was the recognition of the sheer amount of effort that had gone in to such a gift along side a feeling that I didn’t deserve it. Another was a sense of just how lonely I’d been feeling. Despite speaking up on Facebook or here now and then I keep my pain pretty private. I don’t want to intrude, you see. Also, I feel like there’s nothing new to talk about, that it’s boring, that it makes people uncomfortable, etc. So I’d been carrying it around with me all day every day and mostly ignoring it, all the while feeling more and more isolated by it.

And here was a lovely, soft, amazing quilt with loving messages from the very people I’d been feeling isolated from.

“You are loved. “

“I know it’s hard”

“Thinking about you.”

Messages of love, messages of hope, messages of humor. All sewn together by a woman who loves me so much she went to this much effort, herded all the cats, to get me a tangible example of exactly how alone I am not.

Tears.

I’m a don’t be nice to me or I’ll cry kind of person. This was so far beyond nice.

When I finally stopped bawling in general I began reading the love notes and began bawling specifically until I had read each and every one. Then I called my mother-in-law and cried on the phone with her for a while as I tried to thank her and accurately express my messy morass of feelings. I’m pretty sure “I have all the feels” was as close as I got.

Then I thanked everyone on Facebook and curled up under my amazing new quilt and took the first successful nap I have taken in ages.

The lovely, amazing, deeply personal and out of this world quilt
The world’s best signature block from the world’s best Mother-in-law.

Life is still difficult. I still really struggle. Now, however, instead of feeling isolated and sad when I struggle, I curl up underneath all the love wrapped up in this amazing gift and I remember; I am not alone.

Yep, there’s a big headache in that head there. Guess what though? There’s also a great big pile of love working on mending it.

The shadowboxer *amended

I have been tentatively diagnosed with trigeminal nueralgia. It’s a clinical diagnosis, meaning they won’t know for sure until we rule out everything else, but the signs are pointing to this baby as the likely cause of my issues.

Trigeminal neuralgia is traditionally called the suicide disease because of it’s recurring, unpredictable, and intense episodes of explosive pain.  I have decided to rename it “The shadowboxer”.

When I was just out of high school I got a job working at the Wendy’s on Colfax and Emerson.  Each day during my shift this homeless man would walk past the windows in our “sunroom”.  He was always boxing an invisible opponent, which on east Colfax isn’t the most uncommon sight ever.  However, I would see this guy get hit back by his invisible opponent.  His head would snap back, he would buckle at the stomach, sometimes he would even get knocked down.  Every time he would stand, reposition into fighting stance, and keep on punching.

Well now I have an invisible opponent of my own.  I get hit or kicked in the left side of my face several times a day.  The rest of the day I spend feeling as though my face has a headache.  My left cheek always hurts, my left eyebrow is sore to the touch.  I have decided I will also continue to stand up, reposition into a fighting stance, and keep on punching.  Hence the name change.

I never know when these boxing matches are going to occur.  The wind can set them off, sounds can set them off, trying to sleep on the left side of my face can set them off, chewing can set them off, etc.

To be frank, I am terrified to leave my house.  I don’t want to become an agoraphobe, but the thought of being out and about when one of these matches comes on is scary.  I am embarrassed by them, they turn me from a smiley fun person into a tense curled up ball of pain and misery.  They make me cry.  Sometimes they hurt enough I have to bite onto something to stop from screaming.  So imagine my horror at the thought of doing this at a party, during the class I teach, while picking my children up from school, etc.  I don’t cry in front of people easily.  I hate crying in front of people.

So, how did this all come about?  Why the sudden change from headaches to the Shadowboxer?  It turns out that people with trigeminal neuralgia can be misdiagnosed as having migraines for a long time before the traditional symptoms manifest.  It also turns out that trauma can cause an onset of otherwise dormant symptoms.  Well, three or four weeks ago I fell on the ice and hit my head.  Three or four weeks ago a tow truck ran a red light and T-boned my car.  I have no medical training so I don’t know if that is why I am suddenly where I am, but I can tell you those events coincide with the pain timeline.

How can you help?  Please don’t offer me advice, unless you have trigeminal neuralgia.  Please do offer me love.  Please let me know if you have somewhere I can retreat to at an event you are inviting me to, if an attack occurs so I don’t have to worry about embarrassing myself and everyone else at your party.  Please reach out to me, visit me, send me notes.  If I cry when we are talking, please just let me cry.  Please don’t tell me how much better it’s going to be.

Trigeminal neuralgia has been described as one of the most painful and debilitating diseases in existence. I got to have that conversation in the medical office when your doctor looks at you, puts on his “Bad News” face, and says “I can try medication and if that doesn’t work, surgery, but if this indeed what you have, it’s a lifelong, debilitating condition”.  So I am not really wandering around feeling like things are heading towards better.

What I need is the ability to express that.  I understand the first knee jerk reaction to someone saying life sucks is the sun will come out tomorrow.  I get it.  It’s a reaction I initially have too.  However, a good friend of mine long ago taught me better things to say.  Here are some examples, if you ever find yourself at the opposite end of anyone facing anything like this, like me.

1.  That sucks, I’m here for you.

2.  I love you.

3. I am sorry things are so hard for you right now, let me know if you need anything and I will try to help.

4.  Hug

5.  I will totally come hang out with you where you are the most comfortable.  I will not be mad at you if you can’t make it to my parties etc.

6. If you want to spend the day watching movies in bed, I will come do it with you.

7.  I will not be embarrassed if you have an attack while we are out.  I will try to get you somewhere you feel safe and I will wait it out with you. Fuck everyone else in the room, they can just deal.

Also Please bitch to me about the things that are going wrong in your life.  I don’t care if you think I am worse off, I care about you and I want to be a person you can talk to. 

Believe me, “well that sucks” is exactly what you need to hear sometimes.  I am working my ass off to get better, to stay cheerful, to keep going.  In the morning I start the day with Pink’s Try, because I do just have to get up and try.  Every day.  When it hurts too much I curl up with my mom or dad or cat and I cry.  I am doing everything I can to get better physically and to make it through this mentally.

But I need you guys.  I do.  I just can’t always go to you, call you, make contact with you.  So please continue to love me even as I seem to disappear from your lives.  It’s not my intent to leave you.  I just have a really scary new opponent in my ring and my match is far from over.

Buttons come and Buttons go

He didn’t notice I couldn’t play.

He didn’t see the effort it took to be there, with him, to be awake and present.

He simply said “I’m sorry you hurt” then went to his bed and brought over the little lap desk he uses for his computer.  He set it up on the bed, grabbed his backpack and favorite books and settled in, saying “Let’s do my homework mommy”.

We read first, because he likes to tackle the hard part first. He read Pete the Cat and his Four Groovy Buttons and we giggled. He made up a song for the chorus, and we sang it together. At the end he read, Buttons come and buttons go, but Pete just kept singing his song. Then he turned to me and said “Pete the cat is right mom.  Sometime stuff comes and sometimes it goes, but we should keep singing our song.”

After homework we put away the desk and backpack, pencils and books, and he got ready for bed.

He didn’t know how much of my day I spent feeling as though I was letting him down.  He doesn’t know how easily he showed me how not to.  His desire was to do his homework with me, and he built a way to do it, regardless of what limitations I had.

At bedtime he held my hand in his and I sat with him while he shifted from side to side, his poor little head still uncomfortable from his ear infection.  So I took an ultra soft pillow, laid his head on it in my arms and held him until he fell asleep. I held him while he settled in, began to breathe deeply, and drifted off.  His hand never let go of mine.

Buttons come and buttons go but my little guy just keeps singing his song.