8. Music & Rehab

Lusito-Land

Genevieve, who is doing so well now, took me to Lusito Land with her friends. It was delicious to have such an evening out, in a crowd of unknown people, meeting new ones, getting superbly drunk together. But there was always that empty space, behind me, not holding my hand, no arms around me, not kissing me. Pangs of guilt mixed with loneliness and longing for Ari. The band playing was Watershed (South African), their music touched me perfectly, so the next day I bought their album, and one for Gen too.

Another day, I went to the News Café in Bedfordview. All alone, I sat at the bar, uncomfortable with all these people staring at me. Some guys were waving at me. I ignored them, I felt vulnerable. So, I drank my beer and left. Three weeks after, or four actually, Antonio from La Pizzarella tells me he saw me there that night, he said I looked quite sad. I told him yeah my husband was in a crash and he’s a bit of a veg for the moment. Rather rough explanation !

Friday 14th May

I had a very rough weekend last week. Even though I’d just written that I had at last seen the light of the road ahead, suddenly, I couldn’t see Ari by myself, I had to go with Sheryl or Annette, I had a full on flu, followed by a stomach bug, and reading reading TRIOMF (Marlene van Niekerk) just got me down so deep.. I needed to feel loved; I was so desperately searching for somewhere to get it. But I didn’t find it. So I went to Grant Avenue, Norwood twice to eat by myself. Friday lunch and Saturday night : I couldn’t go home. I just couldn’t face everyday life. Plus the last couple of times I’d seen Ari, he had been completely unresponsive, or else fast asleep – and I need to see either a smidgeon of progress or at least a recognizing look from him to feel good every day. He was supposed to get the tracheotomy out from Monday (they would start first spigotting to check if he really could cope by himself, then eventually they would have taken the whole tube out of his trachea), but his urine infection slowed things down – temperatures, sleeping, wheezing, antibiotics, high Heart Rate. No good. Nevertheless, the week did turn out very positive in the end. I brought Zoë to see Ari on Wednesday, for the very first time. Leonard of course thought it was a bad idea, “she’ll be traumatized – buy her a toy first so she thinks this day is fun, yada, yada’’.

Well, it turns out Zoë preferred to go see her Daddy, rather than go to the toy shop. So we went there first. I had talked with her many times before, she hears us talking and I’d made a little video the day before. She knew what to expect.. Luckily Ari was wide awake when we arrived, busy being dressed. His face lit up so much when he saw her ! He really seemed pleased. And Zoë tried to climb on the bed to kiss him as I said she could, but it was too high, so she went all red and said “I can’t reach …” We put the bed down a bit and she gave him a big kiss. Then Ari needed a change of clothes and privacy, so the two of us went exploring and I showed her the whole hospital. Gyms, rooms, kitchens, offices. Not too big ! Then Ari was wheeled to his gym for physio, she followed all this with much interest, always bubbling with drawings. She played with one of the assistant physios, Lindy, who called her Chomy, and Anna did some shapes cards with her while Ari dozed between exercises.

  • Zoë loved the big orange ball Ari uses for his stretching. She saw him getting his trachea suctioned, and she understood the idea. She climbed on the bedside table next to Ari and held his hand. When she took it away, he searched for it, so she put it back. He was happy to see her running around, hearing her voice. I had told her that the three other guys in Ari’s room were a bit funny because they sleep all day long, but with their eyes open. Actually, quite surprisingly maybe, or not at all, she was just fine with all this, a new experience to add to her list ! So now we’ll see what happens with Luca, three years old may be a bit young… but only when the trachea comes out. I’d hate it if he pulled it out. But I don’t think he would – another case of underestimation, I think. I reckon the only thing is he would get bored quickly and probably cause a bit more havoc than Zoë – and then again maybe not !

    My musical phases

    1st day : Marylin Monroe in the drive with Gina to Sunninghill. She doesn’t like, but tough-luck
    StoneSour : anger, anger, scream, scream
    Saliva : remembering Neil, grief, anger, scream
    Norah Jones : must calm down, have energy for Ari. Bought 2nd album, love Ari, love, health, happiness
    Evanescense : despair, crying, where to now, missing Neil again
    Dido : I’ve accepted all this, my old life is gone, this is a new road to travel
    Watershed : travelling steadily on new road, I’m there for Ari as he needs me
    Watershed – Kensington days : despair at Ari not getting better, getting worse. Crying, crying
    Jamie Cullum : Ari’s home, mello, hard work, improvement visible, things coming along

Sunday 16th of May

So this week was much better than the last. Everyone has gone to Dullstroom and I’ve been given the important responsibility of feeding Ari, as Alex the Speech Therapist is away for the week-end. Well on Friday afternoon, he just slept all along, so lunch was taken away. Spencer came to visit in the evening, we chatted for a long while, with Ari listening and watching TV too ! I then went with him to Bedford Center to have some food and drinks with Genevieve and other friends. Spencer had the flu, so he went home, but the rest of us went on to The Doors metal club in Edenvale and then Corona Café across the street. A wonderful evening of letting go and recharging. A few haunting memories and mello moments of times passed at The Doors with Ari and Neil not so long ago, but manageable. On Saturday, I was very tired but fed Ari breakfast – great feeling ! Then he was too sleepy for lunch after his stretching and coughings. He is starting to get a bit of sitting balance, bit by bit, and his two eyes stay together when he is not tired. Anna said I should take him outside a bit, so I very proudly did it. He gets tired of sitting though, so after about two minutes, he was sliding out of his chair ! Luckily, one of his nurses was having a smoke outside and came to chat and help ! So, five minutes of sunshine next to the Isuzu in the parking for Ari today ! When he fell asleep, I went to Norwood for lunch at La Suite and burrowed deep into my book for a while, sitting at a table on the pavement surrounded by normal people leading normal lives.

And then what a party! At first, I’d thought everything was unusually quiet on Grant Avenue. After fifteen minutes I spotted people watching TV and remembered that today is Soccer World Cup vote decision day! Sure enough, right then noise exploded everywhere. People from windows knocking, hooting, swearing, dancing and cars everywhere. We’ve won the 2010 bid ! South Africa is going to host the biggest event of its history. What an honour. I enjoyed being surrounded by all that happiness.

Had a nap at home after a long random drive in the suburbs. Evening at Ari, gave him a chocolate mousse from Woolies. He enjoyed that! (I think) Quick dinner at La Suite. Fell asleep after Pearl Harbour on TV.

On Thursday there was a bit of a bad story. You know, being with Leonard and Sheryl so much, I was getting quite irritable. Now it seems that Ari can claim from his life insurance policy for permanent disability, the amount of R380’000 or so. Fine, good. But apparently the insurance needs Ari’s signature to pay out. And Norman Schwab the insurance guy says if we want it quickly, we must get Ari under curatorship. Otherwise we’ll have to wait until he’s 100% compos mentis and can sign for himself before they will pay out the money to him. And that means that someone is appointed like a trustee to look over his financial affairs while he is unable to do so. It is supposed to be a third party completely independent from the person. So Ari’s parents start the proceedings with their attorney Jack Cohen. Only they decided that Sheryl should be appointed curator so that no-one outside the family will get involved in his financial affairs, and she reckons that she is perfectly capable of looking after her son’s interest. If they got it, they’d control my life financially, because Ari and I have always operated from his personal bank account, and being married, we are completely tied into each other. So needless to say, I was not very confident about that. Doesn’t sound good to me. Why do we need the money so soon? If we wait we lose out on a lot of interest. But damn, it’s not worth it in my opinion.

Luckily pros and cons weighed out, Bev the neuro-psychologist says Ari will probably be able to sign for it in couple of months – plus, curatorship costs R30-40g. Perfect! All’s well that ends well.

Ari is now completely off Ativan and Valium, so he only sleeps when he is tired, and then he is well awake. Temperature is fine, HR lower, chest sounds good, excellent cough and can breathe well with oxygen saturation good when the trachea is blocked. I even heard his voice yesterday, albeit moaning from sore physio exercises. So Monday we should definitely walk down the road of no tracheotomy! Even Dr Fredericks said so. At last! He hasn’t been very responsive though, but Bev says it’s okay. He is working on physical not mental at the moment. He has to share out his energy. At least he eats quite well, when he’s awake.

 

Monday 17th May 2004

Progress progress on the banks of the Ari River. Many weeks have passed, and many more to go – but at least we know there is only good ahead.  Ari is already spending time staring at fishing magazines, just to get himself into the vibe again ! His kids are now visiting him almost daily, they want to give him that extra motivation. The physio-terrorists are also making sure he won’t want to spend a minute longer than he has to exercising his aching limbs, so he has begun eating as much as possible to make himself strong again.

Thank you to all you fans out there writing him your well-wishes, carry on the good work, and don’t let those big piscatorial prey figure they’re on holiday while Ari’s away !

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