Tue the 30th of Mar – Angels and Demons

I can’t remember the precise nature of our conversation but I know it triggered the strange event that followed. It starts with Mar saying that she gets it: “Oh my God Paul.Oh my God! I get it!” I don’t know what exactly she gets but her moment of enlightenment has her bursting in tears and seconds later screaming her head off. Just before, she stares at me with intense conviction and very “lucidly” explains something about Angels and Demons. I try to calm her: “Mar, everything’s ok. Come back, Mar. Everything’s ok.” Her outburst attracts the nurse’s attention and soon after, that of the Doctor. Both are women. Eyes bulging, extremely pale faced, she continues on about the war waged between the Angels and the Demons. Among many names (which I shall not document to protect the privacy of the recipients!), she lists the doctors that are Angels and those that are Demons (luckily the Doctor holding her is an Angel. Incidentally so am I. Pfew!). “We have to win” she says. She looks intently at the Doctor and asks in Italian: “You understand, don’t you? Don’t you? No. You don’t! You don’t!” She struggles to free herself from her captors' grip and to get out of bed. She gets violent. I am pushed aside by the doctor and both she and the nurse are holding her back. But in Mar’s skewed perception, they don’t get it and therefore must be against her since they are preventing her from spreading the word. So she tries to kick the doctor out of her way, who clearly must have turned over to the dark side thus becoming a fallen Angel. They’re worried she’ll rip out her catheter which is connected to the plasmaferesis machine. I’m told to fetch another nurse. As I rush out - stumbling backwards, unable to tear away, riveted by the scene - Mar, still held down reaches for me and shouts (in English): “Paul. Call the Media!”. Hilarious…Were it said at any other time and context (later in the day we’ll laugh about it) but right now it’s a nightmare. After a good five minutes (that seem to last forever), Mar has regained some form of composure. I’m back by her side, holding her hand, smoothing her hair, trying to get her attention and repeating several times: “Mar, listen to me. Look at me. You just had a hallucination. It’s ok. It happens. Everything’s ok”. She still seems overly consumed by whatever chemically induced epiphany she witnessed and just when I think she’s back in our world, she whispers to me…”Are we back in our human forms?”

Gradually she relaxes and realizes what just happened. She’s mortified and deeply embarrassed. The doctor and nurse reassure her that she’s not the first to succumb to such an episode. Apparently Mar is experiencing paranoid hallucinations. The doctors are running more tests to determine what’s provoking them. They narrow it down to three main suspects: the medication she’s on, the ear infection that may have spread or the syndrome (Moskowich) that may be causing little blood clots in her brain. Thankfully, these mental side effects are reversible.

There’s more. She’s also been suffering from involuntary spasms and light convulsions. Mar is completely panicked and for the last three nights has been unable to sleep. In this period, the doctors have been very frequent visitors in her hospital room and Mar’s been making full use of this “complimentary room service”.

When the doctors aren’t available, she resorts to explaining her condition to the nurses. Unconvinced by one of the nurse’s ability to retain information and doubting his understanding of her situation, Mar proceeds to write down every felt symptom along with her self diagnosis and urges him to pass this on to the doctors. Nothing conveys a message more seriously than writing on a pink, kiss shaped, sticky note (the one I use to write her words of encouragement)… “Dear Doctors….My nervous system is slowly detaching from my brain. Help!”

Last night her fear culminated in a phone call to me at 3am asking me to come over. Always true to her nature, even in her terrorized and delusional frame of mind, she still tried not to alarm me: “Paul! Paul! Don’t be afraid, ok? But I need you to come here in the next 2 hours. Can you do that?” Of course I could! And I’ll stay for as long as she needs.

In hindsight, both Mar and I agree that her behavior has been a touch odd if not paranoid in the last week! For example, she was convinced that one of the nurses is a psycho, out to get her by tampering with the liquid medication bags. Unsurprisingly, this nurse fell in the Demon category of my earlier story.

Thu the 18th of Mar – Pick up the phone!

The Universe really does operate in mysterious ways…I asked all our friends to picture a happy healthy Mara sipping on a nice cocktail on a beautiful warm beach with her friends very soon. Well, on Monday we sat under the mild Umbrian sun while Mara drank an “exotic” pineapple juice…So Friends, your channeled visualization technique worked and the Universe did listen. Great job! We’re almost there. Now, let us focus on being a little more specific. This time, visualize a very HAPPY and super HEALTHY Mara. Perhaps you can throw in a handsome hunk (or two) and a private Yacht as well if it’s not too much trouble? Also, the beach is in Bali. That’s Bali, in Indonesia just so you know! Thank-you very much.

Mar weighs 57 kilos. On Tuesday, in four hours she gained 4 kilos. She was panicked about the sudden weight rise. The doctors insist it’s nothing to worry about and that the water retention is due to the treatment she’s receiving. But Mar can’t even stretch her arms anymore because they’re so swollen. Let alone walk. She looks like the Michelin Man. Also she had an allergic reaction to the blood transfusion which had her heart racing at an alarming rate. Naturally she was exhausted by the time I arrived in the afternoon.

It’s hard to determine if Mara suffers more from physical or mental fatigue. It’s probably both and clearly one influences the other. She drifts in and out of a lethargic state and it’s difficult to keep her attention, assuming it was there to begin with. Sometimes she pretends to listen, but I can tell from her distant look and her pre-programmed nods that our words are not connecting with her brain. She’s in Mara Land and I’m not sure this shield of her own making is a good thing. It might protect her from the hospital gloom but it’s also isolating her from the real world. And she needs a good doze of just that!

Yesterday I snapped. Since she’s a little hard of hearing (lingering courtesy of the chemo), I articulate every word clearly and a notch louder than usual. Of course I’d never admit to this so when she once asked if I purposely raised my voice for her benefit, I lied: “Noooooooo. THIS IS HOW I ALWAYS SPEAK”. No need to add to this fleeting insecurity. Anyway, where were we before my digression? Right. I snapped and gave her a whole (what I hoped was) motivational spiel. The conversation went a bit like this:

Paula: “Mar, just because you’re back in the hospital does not mean you’re not recovering. So just move forward. Be as normal as you can be. Control what you can control. This is YOUR road to follow. No, wait. It’s your highway to take so just freaking take it! So eat, read, get out when you can and please, please, please call your friends!
Mar: “But Paulita, I just don’t feel like talking. It feels like I’m whining.”
Paula: “Then don’t. Just listen and let your friends do the talking but for heaven’s sake, just get out of your freaking cocoon and get on with it already! Do you hear me? Am I clear? (an unconvincing nod)Yes? Ok, then summarize what I just said.”
Mar: “Pick up the phone and start calling?”

Well, it’s a start…when I got home in the evening, Mom just got off the phone with Mar who had called. While I appreciated her effort, I texted: “Calling your family doesn’t count. Pick up the phone and try again!”
Mar: “I knew you were gonna give me shit. Ok. Ok.”
Later that evening, another text: “I tried calling three people and no one answered…Oh well!”
How convenient…So I responded: “That’s great. Now listen very carefully: when they call back, YOU PICK UP!”

Mon the 15th of Mar – Road Rage

(TomTom)Tim’s becoming an old fart. Just because I programmed him to warn me when I exceed the speed limit does not give him the right to tell me off every 5 minutes. Back off Tim! So what if I like putting the pedal to the metal a little harder than usual? He even has Dad siding with him. Yep, my honeymoon period with Tim’s definitely over…Thankfully I don’t suffer from road rage but surprisingly (Yes. Really!) I do spark it in fellow drivers. Not many but enough to wonder how “little polite me” can ignite such fury in others. Today, I was minding my own business or at least thought I was, when the guy behind me, who just suddenly (Yes. Honestly!) appeared out of nowhere, started shouting muted profanities at me through his window as he overtook me. He looked really mad and menacingly raised his hand at me. Fortunately Italians don’t give you the middle finger (now that would be totally unacceptable) so I just felt like a really naughty kid about to get a good spanking.

I stay pretty relaxed when others go crazy but since I am open to feedback (I am after all a new driver) it’s a real shame we couldn’t pull over and have a constructive conversation on how to improve my and/or his driving skills…I can’t say Dad agrees. As soon as others start yelling, he seems to take it as a personal affront on my behalf and vociferates just as animatedly in response. It’s a pity only Mom and I have the privilege of hearing his infallible argumentation.

Mar’s condition is stable but it’s not improving yet. The doctors are again discussing a different treatment. There doesn’t seem to be a standard protocol so it’s still trial and error. In the meantime, she now also suffers from high blood pressure and her legs are so swollen that they’re painful to the touch. She says her feet look like elephant stumps and she hobbles instead of walks. She was allowed to leave the hospital yesterday and today for a few hours. Since she can’t walk for very long, we picked her up in the wheel chair again. Even though we’ve been through worse, it was still a harsh deja-vu. Mara has many moments of depression but there’s still a lot of fire in that girl and that will pull her through this.

This afternoon, she was pretty chatty and yapping away about one thing and another. In mid-sentence she just stopped and was suddenly distracted by the headlines of the newspaper Dad purposely shoved in her face. They weren’t at all riveting but serve as an example to illustrate where her interests clearly still lie. Lesson number one in an effective “Mara diversion tactic”. When in conflict, always keep a current affair up your sleeve ready to be quoted. It is guaranteed to get you out of any original argument you had with her. The only flaw in this almost perfect plan is that it is sure to catapult you into a whole different sea of political, socio-economic trouble.

Sat the 13th of Mar – Happy Birthday!

Today’s Mom’s Birthday. It’s also the 8^th month since Mar’s transplant. My parents and I went out for lunch to celebrate. When Dad poured water into our glasses, I didn’t have the heart to tell him he was partially watering the table cloth as well. That’s what wives are for. Mom didn’t skip a beat and took her wifely duty very seriously: “Thy shall make fun of thy husband whenever possible”. You see (no pun intended), he tired of wearing his sunglasses and so he found a more practical yet infinitely less fashionable solution. He’s back to wearing his “normal” Harry Potter glasses but replaced the left lense with a dark one. I love him but he looks like a total dork.

In the afternoon, Mom and I took turns visiting Mar. I refuse to wear a mouth cap in the hospital room even though it’s required. Wearing it somehow feels like a betrayal. As if I were admitting to Mar being sick. And I don’t think she is. At least not like before. I don’t want her to think she is either. What’s happening is a complication and what ever it is, it WILL pass. I want to believe this and more importantly I want her to.

I am worried though. Mar has no appetite (I think it’s stress related) which means she’s losing weight again. She feels nauseous, has diarrhea and is coughing again. The treatment doesn’t seem to have any visible effect yet and she’s still bloated. What troubles me the most is her frame of mind. She’s often demoralized and is less responsive to my over-exaggerated attempts at cheer leading. Yesterday, I adjusted my strategy and spent most of the evening hugging her (very carefully since the catheters are in the way), rubbing her back, smoothing her hair and holding her hand. This all seemed to soothe her the most.

Anyway, this evening, without the mask, I caught the eye of one of the male nurses, Alessandro. In one breath he asked for my name, place of residence, age and marital status. Impressive…Next time I’ll bring my resume. He must’ve approved because after that, he walked in without the mouth cap saying it wasn’t necessary. Oh goody. We agree then…I smiled sweetly and kept my mouth shut but as soon as he left Mar teased me in a singsongy way: “Somebody fancies you!” Before this stirs any more smart ass remarks from my friends (because frankly who needs enemies), let me make perfectly clear that I’m not interested in men with Mohawks, diamond studded ears and a preference for hip hop music. Also it’s just too weird being hit on while he tends to my sister’s medication. Oh well, let’s not be too harsh on the man. I am after all irresistibly charming…And super modest too!

Fri the 12th of Mar - Humanoid

We’re all a bit down today. They had to place another catheter into Mar’s chest this morning because the first one wasn’t the right fit. Apparently she needed a medium, not a small (please forgive in advance my lousy attempts at humor).. So now Mar’s walking around with plastic stubs dangling on each side of her chest. It’s not clear to me why one wasn’t enough or why they couldn’t just adjust the first one. I don’t understand why my sister’s being turned into some android with tubes sticking out of her…Needless to say she’s very upset and so our beloved humanoid broke down last night. And this morning again when they anesthetized her to insert the tube. One doctor thought it might calm her if he showed her the size of the tube going in. Thank god a brighter and wiser nurse blocked him in his idiotic action. I can see it before me. The nurse diving in a very practiced defensive tackle yelling: “Noooooooooooooooo”. All this in slow motion for better audio-visual effect.

Mara felt so wretched they allowed her to send for one of us to comfort her. The moment we received her text message, Dad flew out the door before I could even blink. It turns out my good old half blind pop can be quite svelte! He took advantage to talk to one of the doctors. Still no news on the effect of the treatment. We’re still in the dark. All we can do is wait and hope for the best.

Wed the 10th of Mar - The coolest ward ever

Mom and I are in a different Italian hospital. This time, we’re here to pick up Dad. A figure in a fluorescent green lycra tracksuit wearing dark sunglasses approaches us. I take in this conspicuous character and mentally debate with myself whether he’s dodgy or cool. Stevie Wonder or Blues Brother? My indecision lasts for a split second when I realize it’s my father! What’s with this very shady look in broad daylight?

He was operated on his eye this morning to remove his cataract. It’s a standard procedure and was planned a while ago. The timing’s lousy but it didn’t make sense to cancel. He’ll have to take it easy and wear sunglasses for a month or so.

We walk with him into the day ward where a scene from the twilight zone awaits us. A row of grannies are seated in black reclining chairs, purses tightly clutched in hand and all wearing ultra funky sunglasses. The flashiest pairs are displayed from huge Pradas to sleek Ray bans! My imagination immediately goes off on a tangent. In my mind the grannies start swinging their heads from left to right in razor sharp dance moves, perfectly synchronized to the beat of the funkiest Jay Z hip hop tune. Mom and I glance at each other and stifle a giggle. I wonder where her fantasy took her.

While Dad struggles with his sight, Mar has trouble with her hearing. The infection in her ears has not yet subsided and it feels like she has cotton plugged in them.
Watching TV with my father and sister was often comical. On one side, Dad’s face would be glued to the screen to see, while on the other, Mar’s ears would be pressed against it to hear. Earlier this week in the hospital, when the doctors came in on their daily visit, she had to strain herself to hear. Professor Martelli doesn’t believe she’s deaf but rather concludes that she doesn’t understand Italian when spoken too fast. If ever you want to offend my sister, questioning her language skills would definitely be the way to go!

Tue the 9th of Mar – Isn’t it Ironic?

The good news is that Mar’s up to 53kg. The bad news is that 4 of those are due to water retention and she’s bloated. Isn’t it ironic? From wanting her to gain weight, we’re hoping she’ll lose some…The Universe works in mysterious ways and I guess we should’ve been more specific in asking for how she’d gain those precious extra kilos! Anyway, Mara’s back in the hospital and the catheter’s back in her chest. I have more than one word to describe the general feeling and none of them are very ladylike. Rest assured, I’m far from cussed out but I won’t bother you with it (yet). Just know that I’m constantly yelling the words in my head and often they escape through my mouth. Mar’s mad, frustrated, depressed and looks according to herself like an overweight wrinkly old chipmunk. Her antibodies are attacking the red blood cells in her kidneys. It’s some kind of syndrome which I made sure to erase from my brain as soon as the Google results came up. They’re just too scary and I’d rather not know. The doctors say it’s not very common but it is an expected complication and it is treatable. It may pass in a week or a few weeks or months or it may not pass at all. The therapy is a bit of a trial and error one. They started last Friday with a daily plasmapheresis and blood transfusions. Depending on how her body responds, they’ll adjust the treatment accordingly. So now we wait…

Up to last Thursday, things were looking up. Mar was steadily gaining weight and feeling relatively well. Professor Martelli even gave us his blessing to leave. In his words, it was time to cut the umbilical cord with the hospital. We were planning Mar’s return to the Netherlands in mid March and I had already left a month earlier. One day I’m socially butterflying around catching up with my friends, the next I’m back in the hospital room holding my sister’s hand. Don’t get me wrong. There is NO other place I’d rather be then by her side yet I can’t help wonder why this is happening. Why to her? What has she ever done to deserve this? What could anyone possibly do to ever deserve this?

It feels harder this time too. Not just for Mara but for all of us. After the last time, she vowed never to be back in a hospital room. Not like this.

Perhaps after enduring this much, we’ve grown weaker in our defense and each new obstacle is blown out of proportion, becoming mentally harder to deal with. I know we’ll pull through this. I know Mara will stay strong and get past this hurdle. But I see how she tries to protect us and reassure us that she’s fine and I’m afraid to ask how much more she can take. The thought terrifies me.

Many of you asked why I stopped blogging. For me, it became a much needed outlet for my grief. I found unexpected solace in pouring my heart out, also in sharing with you and receiving so much comfort from you in return. The words seemed to flow easily through me as times became more dire. Then when the skies started to clear and a bright light shone through with all the promise of Mar’s recovery, my need slowly ebbed away. The inspiration that had previously compelled me to write simply disappeared. As I update my blog tonight, I can’t help but hope that any renewed “inspiration” will be very short lived.