Work in Progress

Maandelijks archief van mei, 2017



When I saw this piece of art, it was like someone had draw the exact image of how I feel right now.

Nothing seems to work with me, only against me. The everlasting pain is growing worse and worse every day. Catheterization had to be turned up a nudge instead of less, my kidneys are not doing so well, I am exhausted to the teeth, so my head hurts more, and the role as caregiver that was thrown into our lap, is taking its toll on our emotion.

Talks with the doctors I already visit, to discuss strange new pains, result in being send from pillar to post. Being back at starting point; my physician, with a cry for help, only to be send home with the same answer, ‘sorry, can’t help you.’ I was so glad Ramon was with me, and I was surprised he was the one that stood up angry from his chair, and walked out the door without shaking the physician’s hand.

I want to throw in the towel. I get the feeling it is all in my head. Why want to pursue, keep pushing to find answers, when nobody want to think outside his box, or take the effort to give it a little more thought. So I put my anger over my sadness and despair. And I am almost punishing myself in doing all sorts of things I am supposed to, but just don’t have the energy for anymore. But I have to! It’s nothing right???!! The pain I feel isn’t real??? Then I shall Goddammit!!!

And then you faint, when doing more than clearly possible….

So last week I asked for help. I called my mom, neighbors, friends. I was scared to do so at first, maybe they all will think I am the crybaby I blame myself to be. But when I did, the response was simply amazing. I was overwhelmed by the love and care I received. I really needed the help at that moment, and it was given without hesitation. Strangely people were even glad I finally asked.


But today was sort of a good day. I could surprise my niece on her birthday. Everything was done. No doctor appointments, or other engagements… just a day of my choosing. So my energy for today could be spend on her. She turned five today, a very important age, because at five, you are no toddler anymore, you are a Big Girl. Sunday will be her big birthday party celebrated together with my nephew’s birthday, because my sister is almost ready to give birth to her third. But today is a special day, today is Angel her real birthday. So I wanted to drop by with Kuzco and Malha wearing birthday hats, and singing Happy Birthday as we walked in. But Kuzco and Malha weren’t in the mood to wear hats, so we just entered loudly, singing our song.

That was it.


That was everything I could do today. I hate it. But I loved seeing the surprised faces, all covered in smiles. And I loved the moment just sitting together with my mom and my sister, who looked so beautiful with her perfectly round belly. That made it all worth the while.




When Malha was three months and bit old, she woke up with a cherry eye. Simply put, it’s a disorder of the third eyelid, where the gland pops out of its pocket due to too much space. At least, that was I was told.

At first, it scared the hell out of me. She was still so tiny, and it looked so painful. Like an eye infection gone terribly wrong…. Overnight… ( vision me with the Home-Alone expression )

So naturally, the moment I woke up and saw her pretty little sad face, I went to see the vet.



A cherry eye, he explained. It doesn’t cause her any pain, it just don’t look nice. Most likely it will have to be surgically put back, but not for now, since she is too young. And with skilled hands he massaged it back, but it caused terrible stress and pain on Malha. But she did great. I was so proud of her, and it was nice to see her eye being normal again.



He warned us that it could come back, but with a little luck, it would stay put.



But it turned out we were not so lucky. The very next day, after a good night’s sleep, it was back again ( vision me with the Home-Alone expression again).



I was told, we probably should let it rest for some while, and when she is grown a little bigger, we could try to massage it back again. Maybe her skin would be tighter to let it stay put.

At five months old, she has grown so fast, why not try now? So we went to the vet again this week. She really has grown fast, and she is such a wonderful little puppy.



If we would have visit consultation office, they would have been proud on the progress she makes.



But the assistant vet told us if we would try again, it would only cause more stress on Malha, and it would be imminent to return again. She used a great metaphor, of a ball pushed under water…it is bound to pop up again. When she made that metaphor, we were both convinced to let it be for now. We will just wait until she is strong and big enough to undergo the procedure, provided off course, that she doesn’t experience any complications sooner.



But as long as she doesn’t give the implication she’s suffering under this ailment, we let her be her bouncy, wonderful, sweet self, with one lumpy eye.




I had to go for a yearly check-up to the hospital in Leiden, the LUMC . I didn’t expect much after my last visit last year.

My condition is rare, at least rare enough to not do more tests to find some cure, or some less destructive medication on the long run. I am stuck with the one that is my saviour as well as my destroyer. So nothing has changed really, except my physical condition off course…. Which is just a minor detail. But on the way to the hospital I started to tear up, and I couldn’t understand why. I know what to expect from this visit, it is only to stay in their system. For times I really need them, and don’t have to go through all kinds of restrictive rules and regulations to get in touch, and for when there magically is someone who wants to invest in the few, with full back-up off course from the health insurers, to find a new cure and need test subjects like me.

Yeah sure, little miss Debit Entry….

Dream on…..

But when I told Ramon about me tearing up, he totally got Vulcan on me, and told me, with full logic off course, that it is only logical…

I am reliving last year’s visit, where they bluntly told me, that I will never get better. And it’s up to my body on my prolongation of life. And now I’m going back to that place, that didn’t do their sales marketing as well as I had hoped. Surely, that messes with your head.

Well…he had to perform a Vulcan mind meld ‘my mind to your mind, my thoughts to your thoughts’, to stay into Star Trek terms, because I didn’t want to give in to such a ‘lame excuse’ of wanting to cry.

I took a deep breath, and swallowed away my lump.

I think he did perform a mind meld, because after he told me that, I could answer the doctor with a straight face, that I understood she couldn’t do much for me, I didn’t expect her  to. As long as they keep me into their system and promise they won’t forget about me…. Just don’t forget about me….


Then I’m alright.

And then she gave me a card, telling me I can always contact them straight away, without going through all the discomforting channels…. And I was happy.

Just this tangible token of not being forgotten, and the ability to ask anything at any time, was a comfort to take home with me. So yet another good thing can be stuck on the fridge today.





Mother’s day has always been a celebrated tradition in our family. When we were little, my sister and I struggled through the amazing breakfast in bed, balancing on a tray with all eyes focussed on our self-made presents we’d created at school. The croissants were replaceable, our DIY not! The song we were supposed to sing for her, was sung the whole day through in at least 10 different variations made up on the spot.

It was fun! And because it was a tradition, you always got to hear the words ; ‘Just wait till you’re a mom yourself… ’ And I honestly looked forward to it.

But it was never meant to be. And that’s why I want to share something of my amazing mother. Each year on Mother’s day, when I open the mailbox, there is a handwritten postcard send especially for me. In my mother’s handwriting the card reads; ‘To the amazing mother of Kuzco and Malha. Big hugs and paws from us dear mommy.’

I have kept them all, they hold such a special meaning to me. My mother, sending her daughter, who technically isn’t a mother, the most wonderful and special postcard…. A card that makes me feel happy on mother’s day, besides being thankful for mine off course, but not feel the tiny little sad pinches when I see all those happy and proud little children giving their best drawing ever, and making their best effort to show their sweetest side. I only feel the happiness, and a little bit like I really am a mommy.

So this card will be kept and stored with the other cards I have received throughout the years. But first it will stay on the fridge. My box of light, my happy memory board, that makes me feel good about myself, and happy each and every time I walk by.

Thank you momma, for your ever endearing thoughtfulness, once again.


When Ramon has to go away for a couple of days, whether its work-related or going on a motorcycle trip with friends, I always go through three stages.

First one, being totally exited to be on my own for a few days. I love some  good company but I also love it very much just being on my own. I like me, we do fun stuff together! Especially together with Kuzco and Malha. And now, with the house all cleaned up with the help of my mom, I love it even more.

We did all kinds of girly stuff.



Some of which Kuzco endured with his well-known grace. Malha and me doing each other’s hair…. Me brushing her fine and fluffy hair, smooth and shiny, and mine totally licked out all of my curls and then lying on top of it to keep it nice and warm…..



Even Kuzco and Malha new shared friend Woofy was in game at many of those occasions. But the shared love is spiking of opposites. The poor soul has suffered some terrible atrocities and near death experiences along the way. For instance, being drawn and quartered, but is still alive and in one piece, keeping Kuzco and Malha happy. We’ve enjoyed the sun,

the rain,



and driving to the park off course, and never want to step off the driving thingy that brings us there….



and even had a lovely dinner on the balcony together watching the sun going down.




But then comes stage two….

And we’re all feeling a bit miserable for not having Ramon around. Still having fun off course, but a little spark is just missing in our setting. The one that plays a bit rougher than me, making you scare when you least expect it, and sharing the last bites of his sandwich when he’s done eating. With Kuzco and Malha that is…. To cuddle against, making me laugh at silly things, and just feeling the love radiate through the house when he is near. Only logical conclusion is to draw him. Simple….



So I did….



And then comes stage three.

The day he comes home. As happy as I was when he left, as exhilarated I am the moment he comes home. This time it was early in the morning. He had to leave at three am, so he was pooped when he got home. So I didn’t have to surprise him with some delicious baked stuff or something.



The three of us waited patiently not so patient. I can totally relate to the doggies. The excitement they feel, I feel as well. But where they are bouncing, barking, howling and drooling of happiness, I keep it cool. Otherwise the door would never open for him to enter…. Duh…

Aaaaaand then….. just like in  the movies, I throw myself in his arms, kiss him, and tilt my leg as finishing touch…. Or something of a less dramatic sort…..



I’m already enjoying my mother’s gift to the fullest.

Yesterday she came by and help me do housekeeping. Lately I keep feeling worse and worse physically, which eventually nibbles hard on my emotional state of mind. Because I’m getting less and less stuff done, because I simply don’t have the energy for it, I’m getting immensely frustrated by my inadequacy. My mind isn’t tired at all. I want to do things…. Finish my chores, write and draw, play with Kuzco and Malha and practice Malha her basics to get basic instead of once in a while… if we’re lucky…

So eventually, all I get done is a half-baked cleaning session, so it only looks clean, and give the rest of my energy to more important things that require my full attention at that moment. There was nothing to it, I had to bow my head and ask for help. But I remembered the stupid phrase, where it said that asking for help is showing strength. Yeah sure… in mental health issues I believe it to be true, but actually saying you can’t even clean your own house, because you want to do something nice for yourself instead….(because that’s how it looks to me)…. Doesn’t feel like superhero stuff to me.

But Superhero or not, I asked my mom to help me, and I loved the time we got to spend together. We are like two peas in a pot. Beside the fact that everything became nice and clean, we chitchatted like only we can, laughed intensely in between, and just had a wonderful time.

Small moments occurred where guilt almost smothered me, feeling it should be the other way around. Me helping my mother instead of she helping me. But like I said…. Small moments….

I am just so grateful for her help. Today I wasn’t smacked in the face by all the things still that had to be done in the house. It was done.

So I could put my energy where I wanted to today, and it was all about taking in the sunny vitamin D, and take my rest. I’m feeling bright and happy inside, and looking forward to tomorrow, even though Ramon is gone for the week to Warsaw for work. I have so many plans on what I want to do this week. And perhaps a few things really do get done, because I just don’t have to mind the house so much.


I had a rough night. I was dreaming and scheming. When it was almost at the break of dawn, I had at least a 1001 plans on how I would take over the world this Sunday together with Kuzco and Malha. Ramon had to leave at lunchtime for a biker ride with my dad. But the thing with remembering your dreams after you wake up, is that you have to be totally focused on your last memory, otherwise you lose all grip on what seemed to be a totally logical story, and everything starts to crumble into in incoherent pieces.



That’s what happened to me. I woke up, and got lost in the wonderful feeling of a cozy snuggling Sunday morning, where Malha still got to hold her morning o’wee’cean till half past eight, and everybody was still snoring and drooling whilst fast asleep.



So I could calmly catheterize, without an audience sitting in front of me, and made a large cup of coffee to take back to bed together with a nice book to read. And then I remembered I wanted to remember something. Something that would make me try to take over the world today. But I just couldn’t remember….

And I couldn’t let go either….

I couldn’t focus on my book anymore. What were all those marvelous plans I dreamed about?

I decided to make us breakfast, and still tried to be half awake, and half asleep. So breakfast in bed was the right conclusion. Maybe all those great ideas would start coming to surface when I doze off against Ramon after a warm bowl of oatmeal.

But breakfast in bed has really been a life time away, and we certainly did not have the opportunity to do so when we got Malha. So both Kuzco and Malha were in awe.



What is this???? What a lovely way to share all your deliciousness!






Aaaaaand, awake….



So out of bed, running outside with Malha to release the golden ocean onto the grass, and then start the day.

But what to do?

So after an agility course throughout the house, playing with Kuzco and Malha, I could almost cry of the exhaustion hitting me hard running through the house as a goofy entertainer. So I decided we should dress up, and show our coolness to the dog/people in the park. I quickly brushed Kuzco and Malha’s hair, and put on my shades of utter coolness, to not show my exhaustion, together with my newly handmade coat that is just bling! We looked grrrreat!




That was it!!!

I would get my tired shit-ass together, and act as if we own the place. Driving down to the park with Kuzco and Malha on my mobility scooter and park it next to a bench, where it would seem I have all the energy of the world, playing fetch with Kuzco and let Malha inspect and extract every clump of grass.



It was a wonderful Sunday funday, even though my body was so tired, and my brain wanted to do so much more.





‘Oh, you are so gifted!!! You truly have the Midas touch!’ Is something I hear often. I have learned to nod and smile politely, but deep down I can only think how much I would rather have bought it in a store. I always say it’s not a gift, it a necessity born out of greed. I see so many beautiful things I would like to have, but I simply don’t have the money to buy it. So if I really, really want something, I try to create it myself, with the means that are within my reach.

I strongly set my mind to it, and 90% of the time, it turns out great. So every furniture in our house, except for the piano, is homemade, upholstered, painted, or sown. Even some of my clothes are self-made. But that is something I really hate to do. Sow my own clothes. Necessary when I want a nice dress for a wedding party, but there it ends. I just don’t have the girls thing with clothes or shoes. Even if we have some money to spare, and I see something nice in a store, the first thing that comes to mind is; ‘do I really need it?’ So more than often I just put it back. I own three pair of shoes, two pants, and a couple of shirts and cardigans. More than enough for me.

And it’s not that I don’t fancy pretty clothes, quite the opposite. I have a very strong opinion on what I like and don’t like. I just can’t get myself to spend so much money on it. On the other hand, the question; ‘do I really need it?’ , never pops to mind when I am in an art supply store, or I see bolts of fabric, or wallpaper, paint, or dog related things I really like. Then I can totally get lost in my greedy need to have.

So when Ramon took me to a favourite clothing store of mine here in IJmuiden, where they had a stock sale from last year’s items, I tried on two things I liked, only because Ramon pushed me to do so. When the saleswoman asked if I had seen the shoes that totally had my name on it, on the way to the fitting room, I deeply wrinkled my eyebrows….

No, off course I didn’t see the shoes. I am not here to buy shoes. I am not here to buy clothes either, in my opinion, but that’s another matter. So naturally, Ramon made me fit the gorgeous shoes, and I loved them instantly. The saleswoman is starting to get to know me, so off course the shoes were also on sale. I didn’t like the clothes I tried on, so we bought the shoes after Ramon and the saleswoman convinced me to.

Yes….I am truly that bad…..

My eyes had already seen other beautiful items of the new arrivals, but also saw the price tag on them. Which I pointed out to Ramon when he showed me a beautiful  jacket he thought I would like.

‘ €300,00. Hmmm, yes that’s a bit much. But let me take a picture of it, so I remember which one you liked.’ Again, I wrinkled my eyebrows and rolled my eyes, but kissed him for being so sweet, because he really did make a picture of it.



I clearly liked the jacket very much, because it stayed with me. So I went through Ramon’s closet, and saw an old jacket of his, he once got from his brother. He never got to wear it, because it’s too small. So with a little tweaking here and there, I could probably make it fit on me. And then I would have a lovely jacket to use as an overcoat this spring. I got my scissors and started cutting. I used my own printed design fabric to add some details, just like the jacket from the store. And there you have it, the Midas touch….



And even though I would love to just have bought the jacket we saw in the store, I would never have a jacket with Kuzco, Maya, and Malha on it.



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Joyce Kleine – Work in Progress