Tag Archives: health

Twinkle Toes: A Love Story to Dementia Dad.

The Sea Island sun blinds me when I look up to see your face. I stop-salute you and squint to block it from my eyes. You and your mustached-face looks down at me, smiling. You reach down to grab my nose and peek your thumb out of your knuckle sandwich. You hold it up and say, “got your nose!

Give it Back!” I yell, but I’m laughing and I’m chasing your serpentine. Back and forth, in and out of the water. I follow your footsteps and try to match them. I put my foot inside yours and I squish it all around. The waves are awfully loud, but I love them and then you grab me and give me my nose back.

I love any beach or water anywhere forever and ever and it’s because of moments like this. It’s safe, you are relaxed and it just means love. I have to run fast to keep up: one-two-three-four Heathersteps, in and out of the water, equal one big Daddystep. You laugh and stop and wait for me. Then you grab my hand. It’s so windy and the waves are so big and they break the silence in a way that makes me close my eyes and be happy. It smells so good. You are so tall and I look up at you and you laugh out the words, “hurry up, twinkle toes.”

I giggle when you take the shells I give you and you say “Ooooooooh, that’s a good one“.

I feel proud that I picked it and you put it in your pocket. I am twirling round and round with the sand between my toes. When I dizzy-stop, stumble and laugh, you are walking back. You’re done. I stop-salute and squint, watching you get smaller as you walk away. You yell back, “Go to mom now.

***

I’m a bad actor and I can’t fake it anymore. I am screaming inside and crying and keening and wailing. Every tiny cell of me is tired. We are now in Defcon 1. I can’t control you. You can’t figure out reason or make sense of anything. There are not people in the corners trying to hurt you. You are not being poisoned. We are not trying to kill you. I wish I could rescue you from the alien world that you are living in your head. It seems so scary and mean and awful. I’d give anything to Stranger Things you outta there.

I spend hours trying to show you how much I love you. Even when I am not with you, I still worry and wonder if you are ok. I’m so sad that you are leaving me; that you have already kind of left. The other night in the wee hours, you were yelling at me:

You do not care if I die.

You are out to get rid of me.

You are not on my team.

You don’t have my back.

When you say these things, I can handle it. Your words bounce off me onto the floor. I can step on them a little and kick them under the couch. I know you don’t mean it. I know you are sick. I am tough and I can fight them off.

Your face looks so different now. I remember being little and tracing your face with my fingertips. “Oops…got your nose.

I know you can no longer read your books; now it’s only faces. I am sorry that sometimes I don’t look at you when we talk. I try to make my face happy, but sometimes, I just can’t.

Feelings transition to some kind of desperation. I want someone there with me to see what I have to do. I need a wingman. I want someone to hug me. I need help with you. I need you to help me with you. I long for the dad I had, to give me advice about the dad I have now. I feel desert Island lonely.

This journey has given me some useful takeaways and Heather 2022 has a new criteria for friendship.: Choose the right people who deserve to hear your story. I love hearing stories of the people I love and I know they hear me back. There is nothing worse than realizing that someone don’t want all of the sides of you. I have been screaming from the inside of insides. I don’t have the energy to only listen and not be heard. I hope to replenish soon.

I think I am spending so much time writing this to procrastinate making phone calls. Calls to find somewhere we can move you away from the home that you worked so hard for and away from the life you knew. Can I call in a sub for this too? Inhale…exhale…

I took a night off from being with you last night to sleep in a real bed. Today, I head back to you and the couch. When I get in the car, I will cry. I will walk in the door with a smile. I will try not to lose it, but sometimes I do. You threw a box of tissues at me the other night. I karate-chopped it from my face and the box went flying. It was actually super funny. Wish you were there.

Love you,

Twinkle Toes

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Awe Is Not Always Happy

Round two: (better late than never.)

How is he talking to me and he looks like himself and his hands move like himself and I’ve sat in this chair across from him a million times while he sat in that chair across from me a million times? Now all his words in their order make no sense like cut up, strung up and mismatched pieces of fabric. I’m trying to smile on the outside and I’m praying he can’t tell that I’m screaming and crying on the inside.

I’m in awe, and it’s not in the fireworks way, or being at Disney way, or a nurse handing one of my babies in my arms for the first time sort of way. That’s all awe filled with joy.

Tonight he couldn’t tell me very importantly what he very importantly wanted to tell me. That’s awe filled with sad.

Falling asleep, broken heart. Scrunch tears and think of years ago, walking on a beach where he pulled me out of the water, laughed loud, called me “twinkle toes”, skipped a rock and bent down to hold my hand.

That’s happy awe.

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Too Sad To Title.

I really want to scream.

I wake up this morning, dragging myself out of bed. I’m yawny and blurry and dreading my 8:30am workout.  I roll over, grab my glasses and pick up my phone to see what I missed on social media. God forbid, I miss something important, since it’s been a whole four hours when I last tried to sleep. And then I see a text from one of my dear friends, to tell me that someone we love died last night.

Fuck.  Fucking fuck.  I can’t.  Shock is weird.  It’s like someone took out my brain and hung it on the ceiling right above my head and it’s throbbing.  I’m feeling so many things, but I don’t actually know one thing I’m feeling.  I can toss out the usual reactions: disbelief, shock, sadness.  I can’t think or type the right words to even describe what that feels like…I can only explain that it was more like I’m slouching on the side of my bed, with an elephant sitting on my chest and I just can’t find a breath to take.

First thoughts….first thoughts…it’s not real.  I think of his life partner. I think of his family.  I pray that he didn’t feel pain.  I angry-cry about him being too fucking YOUNG.  Warning: I’m going to spill the beans and share all the crazy shit that was going on in my head.  It’s embarrassing, but maybe something relatable. Or maybe it’s just thoughts that prove that I need professional help.  But it’s real, it’s raw and it’s the truth. And it all comes from me hoping that in our very last days, we know how much we are loved.

My mind is a Rolodex, flipping to the last time I talked to him. Flip, flip, flip…when was that? I just had an email exchange with him a week ago…two weeks ago…was it a month ago?  It could have been six.  It was business.  About a booking? Was I loving, responsive and kind?   Or was I curt, short and to the point?  Is that the last impression he got from me?  Did he know how much he meant to me?  Did I tell him how much he meant to me?  Fuck.  No, I didn’t. We, as humans, don’t do that all day, every day. It was business about a booking…it was…normal day stuff.

More thoughts are spewing: why didn’t I tell him how much he meant to me on one of the last times I saw him.  That time recently at a show.  When I saw him looking up at me,  smiling at me, watching me from off-stage. Why didn’t I scream out to him, “I love you and I am grateful for you in my life, my friend?”  He deserved to hear that every day.  We all do.   But we don’t think that every time we say goodbye to someone…that it might be the very last time.

I want time back.  I want the early days with my old pal, when we were jamming in his family room in the first band I was ever in, when I was in the best times of my life and I didn’t know it, and he was teaching me Chaka Khan tunes and we were drinking PBR; underage and unforgiving, I want to go back to that and take his face in my hands and say, thank you for being in my life.

And then when we re-connected through music in the last few years…he found out that, even though I’m an old Golden Girl now,  I’m still musically at it, kicking around on stages and still fighting the old gal fight.  He heard I was still singing, and he reached out to me with that beautifully gargantuan smile and said, “Hey.  Let’s do something with your music,” Then again, I should have taken his face in my hands and said thank you for again for still being in my life.

Recently, he hired me to sing in a place, and there was a random hole in the floor.  He quietly, yet deftly remembered that I am, and always will be, a ditz.  AKA: a girl who will always fall into holes.  He pointed down and said, “Heather, don’t fall in that hole.”  I walked past that hole in the floor without incident, turning back at him with a smirk on my face and simultaneously patting myself on my own back.  Then he pointed to a door in the back of the room and gave me a warning look. “Walk through here.  It’s cool behind there, but be careful.”  Obviously, I strutted through that door and I immediately fell way down into a much bigger hole.  But it was a fun fall, because I got to hear that old laugh.  It was lovely; ringing robust and true just like those good old days.

What now.  I feel too many things.  Mostly I feel so deeply sad for his amazing partner and his loved ones; all the people who will feel the loss every day.  I’m feeling again so much sadness for those who will now have to walk around everything and everyday without him.

Now it’s the wee small hours.  What to do now?  Gradually all day,  I was checking Facebook, watching how so many people were grasping to mourn such a tragedy.  Share how much they loved this man by posting pictures and stories and dedications.  I did the same, trying to to connect and grieve together. There were so many loved ones, yearning helplessly to write to him and tell this magnificent person one more time how much they loved him…hoping so hard that he can hear all of us from up above.  It’s so desperate and yet so very needed for many of those left behind.  All so overwhelming and heartbreaking and scary and final.

I once had this kind friend in high school and he asked me to be in a band. He taught me things about music that I still sing out of my mouth today.  Lately, he found me again and I got to see that wide, electric smile and share some laughs and a great love for music.  Then, we lost him too soon and I wish I had more. I wish I did more.

Ferris nailed it: “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”

Life is, indeed, gorgeous. It’s work.  It’s tiring, yet so rewarding.  It’s filled will so many layers and it is enveloped with all the different kinds of love.  It fills your heart and it breaks your heart and then it’s over way too soon.  My old friend, thank you for your friendship.  Heaven is jamming to your serious super-funk tonight and for always. How lucky are they up there? How lucky were we down here. XO MT.

 

 

 

 

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Fallopian Send-Off Countdown…and Go!

I just scheduled my appointment to get gutted.

This moment only took me four years.   But alas, I am here.  I have officially been put in a vaginal timeout by my Lady Doctor and there is no going back.  My last check-up a few weeks ago with him went a little something like this:

(Scene: Doctor’s office follow-up with results, after complete biopsy under the hood.)

Lady Doctor: Besides your endometriosis, your fibroid is growing.

Me: I’m an overachiever.

Lady Doctor: (Not amused.  I start to think: when you look up chee-chaws all day long, I guess humor slowly erodes away like lining of a vaginal cavity.)

Lady Doctor: Last year your fibroid was a lime.  Right now it’s an orange.  It’s time.

Me: Hm.  Ok.  Now, would you classify that as a clementine? I love those little guys.

Lady Doctor:  (Not amused.) Not at all.  The big one.  It’s time.

Me: That doesn’t sound apPEALing!

Lady Doctor: (Literally no expression.)

Me: K.

*****

Fallopian-Tube-1

My Trunk Junk.

Friends, meet cervix.  Cervix, meet friends.  In 2 short months, all of these once-overactive baby maker tools will be Jack-the-Rippered out of me.  Sayanara, sweeties!

The saddest part is all the excuses I have made.  I can say that I put these shenanigans off because of “work”. I book our gigs months in advance and I don’t want to screw my musical partner out of months of work=valid.

I can say that I can’t afford to stop teaching and singing for two months=valid.

I can say that I don’t want to leave my students voice teacher-less in the heart of high school spring musical audition season=valid.

I can say that I am scared to get all the weird and non-glamorous side-effects I will adopt, after they rip out my woman bits=valid.

I can even say that I am not sure what I am going to do with myself for two months, because I literally have watched the absolute and complete entire collection of Netflix=VALID TO ME.  And also embarrassing.

But the real truth…the one that festers and bubbles…the one I dare not whisper to anyone, even sometimes to myself…is that I am dreading the pain=The most valid.

But it’s going to hurt me so badly.  Not so much from the relinquishment of my reproductive whozits and whatzits galore, but my actual BODY will pulse and vibrate with breath-taking pain from not being medicated.  I have to go off of my Humira 10 days before and I can’t start up again until 6 weeks after.  During that time, my rheumatoid arthritis will unleash from the very gates of the seventh circle of hell to attack every joint in my body.  It’s a dark place, brother.

I could be all Pollyanna and pretend that it will “not be as bad as I think”, but fuck glasshalffull.  I know it will suck hard, because it happened to me unexpectedly last year.  (Please refer to the past WOUND posts.  It wasn’t pretty.)  It freaking hurt.  I’d rather have 5 more babies, all popping out at the same time.  Oxycodin from my surgery will help, but eventually I will have to stop, to prevent me from being an addict looking for a fix in the parking lot of Mariano’s, Zumba and all the other popular mom-addict drug spots in the surrounding Lake County area.

But it’s time.  Now I have 51 days to really show my ovaries a rockin’ good time.  I’m taking them to Florida.  I am definitely not going to neglect them from any opportunity to enjoy a tall Tito’s and soda.  They can help me decorate my Cubbie Christmas tree this season.  I’m even going to dress them up in flapper sequins and let them sing with me at my big closeout NYE gig this year.  They will want for nothing…..these bitches will be spoiled, but they are going out in style, yo!

Word.

 

 

 

 

 

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