Denial

I pick up the knife and fork and start cutting into a lump of TheraPutty – a long mauve sausage. I have graduated from blue TheraPutty to the harder mauve stuff. I carve with ease.

“You’re doing very well,” says the occupational therapist.

“I want to erase all the effects of MS from my body; I plan to have a complete recovery; it will help me deny that fact that I have this disease... until the next attack.” I add the “until the next attack” bit, so that she can see that I am of sound mind. I don't want her to think that I am suffering from the delusion that I am in perfect health. (It is no delusion, my health has never been better, but the medical professionals have labelled me chronically ill, and if I show signs of not accepting that label, I will, no doubt, be signed up for counselling, and I don’t have time for that.)

“Well, you’re doing very well, to look at you, no one would ever know that you have MS.” Thank goodness. Whenever I see someone staggering up and down the aisles of the supermarket, my first thought is no longer “disgusting drunk”, but rather: “Have they got MS?”

I chop TheraPutty and thread beads on lengths of string with the zest of a religious convert, convinced, although doctors have assured me that there are no guarantees, that I can save myself from a future in a hell in which I ricochet, dizzy and nauseous, from supermarket shelf to supermarket shelf, the “tut-tut” of the disapproving public sounding in my ears.

“Have you got in touch with the MS society yet?” asks the occupational therapist.

“No, I’m trying to deny that I have MS. Calling the society would mean that I have accepted it, and I’m not ready for that yet.”

“They can send you an information pack for the newly diagnosed.” The occupational therapist writes the number of the MS society on the top of my latest worksheet of TheraPutty exercises. I pinch the mauve dough hard.

I won't call, not yet.

Occupational therapy

“I’ve got a referral for you from Concord hospital,” said the woman on the phone.

“Oh I don’t think that I really need occupational therapy; I’m much better than I was.” I can open tins; I can grip the steering wheel of the car: what more do I need my hands for? So, I can’t write with a pen – but really that is so yesterday. I communicate via email.

“Well, we have to follow through with all referrals,” said the woman.

“Well, ok, but I hope that I don’t waste your time.”

And, so, on Wednesday afternoon, I turned up to Greenwich Hospital, ready to be rehabilitated.

“Hello, I’m looking for the rehabilitation department,” I said to a woman in a swimming costume, pushing open the door of the hydro gym.

“Is it for you?” asked the woman, tugging at the legs of her costume. I looked around. There was no one else in sight: why would she think that I was inquiring for someone else?

“Yes it’s for me.”

Swimming costume woman directed me to some tables and chairs in a large gym.

Soon a doctor appeared, and greeted me by name, and then launched straight into her first question: “Any bowel or bladder problems?”

“No, not yet,” I said. It’s what might happen that I find scary, not what has happened.” I have looked at lists of all the possible symptoms I might experience and have ordered them into two groups, those that I think I could cope with, and those that are too hideous to even think about.

The doctor then began her examination, which involved much pricking of my body with the point of a stretched out metal paperclip. On the basis of the examination it was decided that I should have home visits by an occupational therapist. Not because I’m so debilitated that I cannot make it to the rehabilitation centre, but rather because all the other people undergoing rehabilitation are octogenarians, and it was thought that I was too young to join the group. Perhaps the doctor feared that hanging out with the elderly for two afternoons a week might depress me, or perhaps she feared that I would disrupt the group dynamic by flaunting my extreme youth, I don’t know.

Laser fingers

“I need a coin for Justin,” said Toby as we were eating dinner on Thursday.

“What do you need to give Justin a coin for?” I asked. I felt a dreadful gloom descending. Was this the start of bullying? The boy next door is the victim of bullies. He gives all his pocket money to a group of kids on his school bus. They buy chips with the money.

“Then he’ll be my friend,” said Toby.

“But he’s already your friend.”

“If I give him a coin, then he’ll let me push the chairs in.”

“Who put Justin in charge of the chairs?” I asked.

“He gave Callum a coin.”

“I see, well all this coin giving has to stop. I’m not giving you money so that you can pay for the privilege of pushing the chairs under the desks in your classroom.”

“I’ve got money in my piggy bank.” This is true he has three dollars. I gave him five dollars to pay for something in Target and the man on the till gave him too much change, so I let him keep the extra money. I know I should have made him give it back, but we were half way home before I could persuade him to unclasp his hand and show me the money, and, well, Target won’t miss three dollars.

“So, what would you prefer do, give all your money to Justin, or buy laser fingers?” Everyday on the way home from the bus stop, we walk past a shop that sells very cheap, imported-directly-from-China novelty gifts, and every afternoon we peer through the window and Toby points out all the things that he wants. And, I say: “Well maybe for your birthday”, and then we walk on. For the past few days, his attention has been fixated on a set of two dollar laser fingers.

“Laser finger! I want laser fingers; let’s buy laser fingers.”

“What about the chairs at school?” I asked.

“I’ll just run quicker and push them under.”

“Good.”

After dinner, I rang up Justin’s mum. I have met her a few times, and felt that she was the sort of mother who would want to nip a money-for-chairs racket in the bud. From her, I gleaned a bit more information. Apparently all the children are supposed to push their chairs under their desks when they get up, but often they forget so the teacher gives a sticker to the child who pushes in all the forgotten chairs. Justin, Callum and Toby all desperately want to please the teacher and get this sticker, but clearly they are willing to forgo the teacher’s praise for a coin.

The next morning, I spoke to the teacher.

“I think that there is a bit of a power struggle going on,” I said.

“There’s certainly a power struggle going on between Toby and Callum,” said the teacher. Apparently each morning they both fight over who is going to sit next to Justin because Justin is special (in their eyes): he’s diabetic. Twice a day the teacher has to prick his finger and check his blood sugar level, and if it is too high, his mum comes up to the school and gives him an insulin injection.

“I wish I could have my blood checked,” said Toby one evening.

“Oh really,” I said suppressing my anger: I will not have my child coveting an autoimmune condition. “Because the doctor wants to check your blood: shall we go now and get it done?” I am the sort of parent that, on catching their child smoking, gives them a cigar and makes them smoke it, all of it, and then says, as the child is vomiting, head hanging over the toilet bowl: “I hope that you’ve learnt your lesson. Smoking is bad for your health”. About a month ago, the doctor had wanted to do a routine blood test on Toby, but Toby had absolutely refused.

“No, no, I’ve changed my mind, I don’t want my blood checked,” said Toby running out of the room, and that’s true. What Toby wants, and presumably Callum wants too, is the extra attention that Justin gets. That Justin gets that attention at a price is something that, as four-years olds, they don't yet understand.

Heresy

I visit my neurologist.

“We’re going to be running a drug trial at the hospital – for people like you, who should be on medication, but aren’t.”

I said nothing. The last time I saw the doctor, he told me about all the drugs currently on the market and their side effects, and after listening, I was relieved when he suggested waiting before I start injecting the drug du jour – Rebif – into my body. And, now, after scaring me off all the currently available drugs, he was suggesting that I take part in the trial of a new “aggressive” treatment. (I am sure, when applied to medication, the word “aggressive” means “with hideous side effect”. My skin is only now beginning to recover from the steroids that I was taking for the past three weeks.)

“We can talk about it at your next appointment,” said the neurologist. “I need to speak to the hospital and decide if we want to put you through it.”

And decide if we want to put you through it, theses words echoed in my ears, leading me to form the opinion that life on the “aggressive” treatment would be arduous, draining, would sap my energy, and make me ill. People die on drug trials. I don’t want to die.

“Are you in pain?” asked the neurologist.

“No, I feel quite good,” I said.

“Because sometimes you can experience a sharp pain in the nerves.”

“Oh,” I said deciding there and then that I would not feel pain in my nerves.

“Well if you do experience pain, there’s a tablet that I can give you.”

“That’s good, but I’m fine for now,” I said.

“Keep positive,” said the neurologist as the appointment came to an end.

Being positive is not difficult. Every day I regain a little strength, which leaves me feeling optimistic that one day I will again be able to get money out of my purse and write with a pen, and as I cannot believe that this is ever going to happen again, despite all the reassurances from the doctors that it will, I feel positively cheerful. I am like the people from the Middle Ages who refused to believe that the Earth moves around the Sun, branding Galileo a heretic, for daring to say otherwise. And, although my doctor is no heretic, his view is shared by all in the medical profession, and no doubt also by the owners of pharmaceutical companies who make big profits out of producing “aggressive” treatments, am I willing to risk my life for a doctor’s belief in an experimental drug to slow the progression of a disease that I cannot manage to believe will progress?

Control freak

The phone rang.

“When are you coming to visit?” asked my mother-in-law. “I’ve got to have something removed from my breast, and I don’t want to be in hospital while you’re visiting.”

I dislike these conversations. I find visits to my mother-in-law’s house very tense. Made tenser by her desire that our time with her should be perfect. And yet, this quest for perfection paralyses her. She worries about what we are going to eat, particularly what we are going to eat for breakfast, often resulting in no breakfast because she hasn’t trusted herself to buy anything for fear that we will not like it.

“I’m not very well. I’ve lost the use of my arms. I can’t come to Germany at the moment. I have doctors appointments and stuff to do.” I did not say what the stuff is, but the stuff, dear secret friend the Internet, I have to do to satisfy an all-consuming need to control my life. I am forceful, perhaps even obsessive, when it comes to planning and controlling events. And, if things don’t go to plan, my inner harridan comes out, and berates and quashes everyone and everything in the way. To be struck down by an incurable, unpredictable disease is the ultimate torture for a control freak like me. The harridan refuses to believe that I cannot control this disease. Is she deluded? She insists that I can control it. The new “stuff” in my life is healthy living.

Twenty minutes of swimming each morning, followed by the ingestion of five servings of fruit and vegetables, and much poached fish. My days are regimented. I go to bed at the same time every night and get up at the same time every morning. There is simply no room in my new lifestyle for a 21-hour flight to Frankfurt, followed by a three-hour train journey to my mother-in-law’s house. She cannot pick us up from the airport because she does not drive to places that she has never driven to before. Yet, around her hometown, she is a reckless driver, seatbelt off long before she turns into her driveway, such is her rush to move on to the next activity.

“Anyway, if you’ve found something in your breast, you must get it removed immediately,” I said down the phone. “Don’t wait for us to visit.”

“Well, no, first I’ve got to see the doctor, and then I’ve got to book into the hospital. It will take some time. I need to know when you’re coming.”

“Look, I really don’t know when we can come,” I said. And I felt guilty, because, I know that if someone suggested a trip to England, I would bop my controlling harridan on the head with a frying pan and be on the first plane, with a laid back, “it’ll be apples” attitude. My arms, and their reduced function, would be no hindrance to a trip to England. My family are supportive; they would help tame the harridan, and if I thought it would help me to stuff their freezer full of fish, then they would accommodate my slabs of frozen cod, and if I leave them to go swimming every morning, that would be fine too. But in Germany, at my mother-in-law’s house, it would become a stressful drama. My mother-in-law and the harridan would battle, each knowing better than the other how to manage things – which we all know is a nonsense as in reality no one, not even the doctors, know how to manage things. My mother-in-law would no doubt know someone in a far worse situation than me coping far better, and then she would start talking to Nick about me when I am standing right before them, because, as I speak German with a foreign accent, I am a simpleton and therefore she must ask him if I have sugar in my tea rather than asking me. To go and visit her in my physically impaired state would be hell. Just thinking about it makes me tense. Before Toby was born I became aware that my mother-in-law is a woman of very set ideas.

“Don’t call him Noah. A friend of mine, her grandson is called Noah. It is an awful name. I feel so sorry for her. You can’t call a child Noah… You will have to have him baptised of course. ”

“If Nick wants him baptised, then we will get him baptised,” I said.

“No, you have to get him baptised, all the other children at school will be baptised. He will be ostracised.”

“I have no idea if the other kids at school with me were baptised. The topic never came up,” I said. If anything the kids I was at school with would be embarrassed if it ever got out that they were baptised. I am quite sure that being baptised was not a “cool” thing in 1980s England.

“Well, here in Germany,” she said, dismissing England with a wave of her hand. “The children have to be baptised.”

And at that moment, I decided to send my, as then unborn, child to school in any country other than Germany.

“Look,” I said on the phone last week. “I really don’t know when we can come to Germany. Why don’t you come here?” She laughed.

“No really, why don‘t you come here and visit?”

“I can’t. I just can’t.”

“If someone travelled with you?” I asked. My mother-in-law does not speak English so having someone to accompany her on an international flight might help. And I am sure that I could find a German student willing to sit with her and help her transfer planes at Singapore for a few Euros.

“No, stop talking about it, I just can’t.”

My-mother-in-law has claustrophobia. She cannot park in underground car parks. She cannot fly, and she would prefer die of cancer rather than overcome her fear of enclosed spaces and go in the MRI machine at the hospital. Nick and his sister just accept this, apparently this is how she’s always been – but I can’t accept it. How can someone let an irrational fear ruin their life and destroy their relationship with their grandchild? Toby last saw her when he was a year old.

I know that I have to go to Germany – I just don’t want to. I am not ready to commit to a date. I know that I have to stop hoping that she will change. I wish I could love her for who she is. I make lists of her good points, but I cannot conjure up any feelings of love. Pity, I can feel pity, but no love.

Improvement

Yesterday, after five days of intravenous steroid infusions, followed by one week of oral steroids and much squeezing of TheraPutty, I managed to use a tin opener to get the lid off a can of potatoes. Things are certainly on the up-and-up.

But, were my efforts appreciated?

“Yuck, these potatoes smell funny. I can’t eat them,” said Toby. He had discovered the chicken McNugget in the days running up to my hospitalisation, and now he scorns naked, fat-poor foods. The recovery of my arms has little advantage for him. When my arms stopped functioning, he had to learn how to do a lot of thing independently, and, no matter how much I improve, we will not return to the days where I acted as his valet, buttoning him into and out of his clothes, squeezing just the right amount of toothpaste onto his brush, and doing up his shoes.

Maybe once I can drive again, he will see the advantage of having a mother with working arms. Yesterday, at half-past three, I received a phone call from the school: “Toby says you are coming to pick him up this afternoon,” said the teacher.

“No, wishful thinking, put him on the bus, please,” I replied.

I feel bad about the bus. During the months running up to Toby’s start at school, I made a big deal about how for the first few weeks, I would take him to school and help him settle in. But, instead it is Emily, a girl from year five, who accompanies him on the journey, delivering him to his classroom in the morning and travelling back with him in the afternoon – she even reads stories to him on the way home.

Marital strain

“I’m depressed,” I said as I sat down at the kitchen table on Saturday afternoon ready for a warm cup of melodrama.

“You’re depressed,” said Nick with disbelief.

“Yes,” I said, surprised and upset by his disbelief. I felt that just days after my diagnosis a little depression would not only be expected but that it would be tolerated. “Why? Are you depressed too?” I asked.

“Yes I’m depressed,” he said.

“Why?”

“No money, crap life. I hate my job...”

“But you can change all that. You have control over your life,” I said stirring my cup of self-pity, scooping up a spoonful of “woe unto me” ready to toss in. “Me, I could be walking along one day and my leg could give way, or I could lose control of my bowel and bladder, in the street.” I wept tears of self-pity, clamouring for sympathy, and yet as I spoke, I was aware that I did not believe that these things would happen to me. But, I wanted Nick to feel sorry for me. I wanted a sign that he cared.

“I can’t think about what might happen. I have too much to do with what has happened,” said Nick. My new steam iron, the one I never got to use, the one I bought the day before I lost the use of my arms, made a noise like a vomiting dog as Nick slid it over Toby’s school shirt. “What do you want me to do?” he asked.

“That’s the point, you can’t do anything about me, but you don’t have to hate your life too,” I said sipping at my brew of self-loathing, hating myself for punishing him, hating myself for trying to make him feel sorry for me, hating myself for becoming the person I do not want to become, hating myself for speaking such rubbish. Nick has no more control over his life than I do; he could step out of the front door tomorrow morning and get run over, and no doubt his body is a time bomb of sinister diseases waiting to detonate and spread their poisonous cells. And what is this sign that I crave? Since I fell ill, Nick has rearranged his life to accommodate me. He drives me wherever I want to go, picks me up after appointments – I could use public transport. He spent all the time that he was not at work last week at the hospital with me, and he took over the care of Toby, who started school during all this – and yet I still felt compelled to push for a sign that Nick cares, the ingratitude.

I left the kitchen, drink half drunk, and walked up the road to VideoEzy, as I browsed the new releases, I was struck by the fact that I had never felt healthier – except for my non-functioning arms, of course. I felt positively bouncy, brimming with energy. But I did not tell Nick this.

Now, a week after the diagnosis, I have stopped moping around being depressed. I have a life to live, and I am not going to waste it slurping the bitter drink of self-pity.

Thank you

Thank you all for your kind and encouraging comments. Reading how much everyone cares has made a big difference to how I feel. The illness is something that I must live with, I cannot change that, but I can choose how I react to it.