The Lovers, The Dreamers, & Me

I caught myself tearing up at the Muppet movie tonight.

Kermit opening the drawer and pulling out his torn photo of Miss Piggy. Piggy showing up with her half of the photo. The whole gang singing Rainbow Connection. Had the kids not been in the room I probably would have been sobbing. Yup, that’s where I’m at. Muppets making me cry.

We had Han Solo and Princess Leia on our wedding cake…but I nearly lobbied hard for Piggy and Kermit. Stupidly I didn’t want to be the ‘pig.’ Truth is I’m part Leia and part Piggy, thus making the choice nearly impossible.

My cousins and uncle would make fun of me a lot growing up. I never really fit in with their world, or the immediate world of my blue collar block. Even my best friend called me a hippie all the time and I’m pretty sure hung out with me just to see what might happen next. Hippie never fit, but it was probably as close of a description as one could come up with for my….shall we say…uniqueness back in the day.

I’m not feeling very unique these days. In fact, I feel downright boring. Ordinary. Normal.

For some reason this annoys the hell out of me.

I take too much pride in grand accomplishments I think and it’s my downfall. It makes me one hell of an employee or friend or science experiment, but it probably pains those closest to me. There she goes again, with one of her HUGE ideas that will end up either causing HUGE headaches or HUGE laughs or HUGE pride or HUGE shame. Never in between.

It can make you love me or hate me. I understand.

Now. Well now I’m finding out how to still be me. Funny how you never stop learning about yourself and you never seem to stop trying to be the best of what you remember of yourself after a ‘crisis’ as our therapist keeps calling it. The ‘crisis’ of me being sick. I’d argue it’s less of a ‘crisis’ and more of a ‘shit show’ but…I digress.

It’s hard to maintain the fabulousness of Piggy when you can’t even find clothes you like to wear, and despite hot flashes and sweats from medication you want at least 3/4 sleeves to cover the never ending bruises from IVs and blood draws OR stretch marks on your arm fat.

It’s also hard to maintain leadership over the rebel alliance and a know-it-all determination to fight a war, be it over the checkbook or homework or health care reform, when your body is fighting a battle against itself.

But then again there they were, Piggy and Kermit, reminding me that someday we will find it and I felt like just maybe they were right. Stupid muppets giving me stupid hope thus making me fight back tears as I sat watching with the kids.

Will we find it though? I’m used to the waxing and waning of my disorder now. The spurts of good weeks and the crash when I end up hooked to a leash and fanny pack pumping antibiotics into my system. Or awaking with dread when instead of being able to easily roll over I feel that all too familiar shot of pain from head to toe and realize I’m laying in a pool of sweat, totally unable to get out of bed without grabbing the ends of the sheets and heaving myself over the side until gravity begins to help and tosses me to the ground.

So what do I do? Only what I can. I start school again and hope it impresses as much as some of my more ‘grand’ undertakings…wanting to deck the family out in green and white because it’s all I have to be excited about. The family pretty much rolling their eyes because, let’s face it, it’s NOT as ‘grand’ as they are used to from me.

I get upset they don’t seem excited for me and pout but the only thing in my life making headlines in this house is if I’m capable of taking care of them all or not. Can she cook dinner? Go to the store? Do laundry? Because when it comes down to it, all of those things affect them the most. NOT if I can keep up with two online classes at Michigan State, but if I can get up and make hot cocoa and scrambled eggs or if my husband has to do it. The practical stuff. I do not blame them at all. Those things are hugely important and exactly what healthy families take for granted every single day. Because if Mom can’t do them, SOMEONE ELSE has to. The good thing, if there is one, is the children are becoming more independent. Especially my eldest, who now prides himself on toaster and microwave use. My youngest, being a bit more like me, would rather make her own breakfast anyway because it means SHE did it and SHE is in charge and SHE needs NO ONE’s help EVER…yeah, that’s my fault.

You don’t really ever think about the mundane parts of your life until you can’t do them anymore. At least not reliably or consistently. When is the last time the day was planned around how you acted walking down the stairs in the morning?

One of the things my daughter wanted for Christmas was her room ‘decorated.’ That meant cleaning out her closet and organizing things. It was a lot of work. Each time I came into her room to help the kids would get upset and visibly worked up and worried because I would begin to huff and puff. My face red. Sweat. Lots of sweat. They both asked if I was ok, over and over, and I truly was ok. Just adapting to actually ‘helping’ and bending over to pick things up and MOVING my body. Eventually I began helping when they were busy elsewhere in the house. It was too much for them and they were too upset by my physical appearance. Some days I couldn’t do a thing. Others I could bag up stuffed animals currently out of favor or fold clothes.

NOT a problem Piggy or Leia ever had. To have to do their work away from the prying eyes of others because they were causing anxiety. Granted everyone always avoided Piggy until it was time for her ‘big number’ but that was because she was a pain in the ass.

I liked it better when I was avoid because I was a pain in the ass.

And then comes the resentment. I’ve changed their lives in a way that wasn’t planned and causes their life to be affected. Moms/wives aren’t supposed to do that. We’re supposed to be the ones who help when that shit happens to everyone else. For those who don’t know Aaron had surgery over the holidays and it was almost soothing to have to take care of him. Myself included. The roles felt…I don’t know..normal? Did he need anything? Could I bring him a drink and his pills? Insisting his foot be propped up higher and sending kids for more pillows. Hell, I was HAPPY fetching beer and making him a ‘sammich’ because I COULD. How ‘grand.’ Sigh.

But then again, that’s where those Muppets came in. Piggy and Kermit piecing their wedding photo together after their crisis reminding everyone that anything is possible, that someday they WILL find it, the Rainbow Connection.

We were told the first few years after diagnosis are the worst. All the trial and error and frustration before finding it. Finding the right cocktail, the right life balance, the right mind-set. Finding the Rainbow Connection.

My Rainbow Connection includes a somber victory. The judge’s decision came last week and we’ve succeed in declaring me, by law, completely disabled.


An invalid at 39-Or just making another grand project out of thin air? Remains to be seen. But it has taken some of the pressure off around here. Which was wonderful if somewhat humbling for me.

Leading me straight back to the singing Muppets. Straight back to myself sitting on the edge of the bed trying not to show my shoulders shaking as the tears wanted to roll out. I have to think we’ll find it,  although it probably IS magic. As long as I keep hearing it too many times to ignore it… sometimes hope is all you have.

Crossposted at As Dreamer’s Do


  1. Lovely. Gotta have hope. Making sandwiches with care and love is a small thing that can bring great joy. 😉

  2. Thanks for every speck of honesty you’ve offered here today and many days prior. I’ve never been in your shoes and yet I can relate in some ways. Last winter my husband had to keep his face parallel to the floor 24/7 for the better part of six months in recovery from 3 surgeries for retinal detachments–and he still ended up legally blind, white cane and all, at age 38. And it sucks. And it has changed our dreams. But . . . I’m still a dreamer. And I can see you are too.

    Thank you.


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