Putting Out The Fire With Gasoline

Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean. Maya Angelou

When India’s admitted to the hospital in late April I understand instinctively she’ll be there a long time. (In fact, she stays forty-seven days.) The massive seizure she’s recuperating from has left her exhausted and paranoid. Since December, her tremor has been so debilitating she hasn’t been able to walk, stand or use her hands. Sometimes it even affects her voice. Her neurologist is eager to use this stay as an opportunity to study her and to experiment with some new treatments. It’s becoming strikingly clear that her current regime is not working.

The first drug India tries appears promising at first. She’s quickly able to transfer herself from her wheelchair to her bed without assistance. But her speech is very slurred. I tell her she sounds drunk which she thinks is hilarious. I hate it. India’s usually very articulate. Always has been, even as a toddler. She could talk long before her contemporaries. In the end this medication is scrapped because it causes an increase in absence seizures.

The Fourth floor is curiously quiet so India’s allotted a bed in a huge room that usually sleeps four patients. Her only roommate is a ten-year-old girl. For the sake of privacy I’ll call her Bella. The first time I see her it’s mid-afternoon and the room is flooded with sunlight but she’s fast asleep. She reminds me of one of a porcelain dolls with her pale, luminescent skin, rosy cheeks and long auburn hair. Her mother says she’s recovering from pneumonia. This is complicated by the fact she’s also recovering from a coma that lasted close to three-weeks. She can barely lift her head. She communicates in moans. India’s so out of it she doesn’t notice Bella at first. Then one day she whispers, “Why doesn’t she speak?”

At night Bella’s mother crawls into bed with her and wraps herself around her. Her father sits at her side all day, stroking her face and hair. The couple is divorced but cordial. He has custody and comes from a small town far away with limited resources. She lives in another city where she’s attempting to finish her education. They’re young, unsophisticated, and stuck in a situation that even the most educated parents would find daunting. The father seems unable to follow the directions given to him by the experts. The mother’s tone when she speaks to her child is loving but when she speaks to the staff it’s demanding, shrill. She doesn’t believe that the hospital is doing enough for her daughter. She tells me that it’s important to be the squeaky wheel. I understand that it’s more than that. Her heart is broken.

One afternoon as I’m on my way back into the room, I overhear one of Bella’s healthcare workers say to the mother. “You’re very angry. Why are you so angry?” I’m surprised by this. It seems to me it’s pretty clear why. Not long ago, her little girl was healthy and now she barely ever wakes up. Why wouldn’t she be angry?

These days I feel a lot of anger. After all, here we are five-years later and nothing has changed. In spite of a regime of round-the-clock medications—Mark and I take turns delivering her 2 a.m. meds—visits to countless specialists, and spending two years on the MCT oil diet. A gruelling version of the ketogenic diet that requires the patient stay clear of carbohydrates and take MCT oil every two and half-hours. When we finally decided to stop this treatment at the end of May, India was taking two-hundred and twenty-two grams a day. Compare this to drinking a tall boy of olive oil. India rarely complained that she couldn’t eat candies. However there were times when it took up to two hours for her to take the oil.

Illness is an expensive business even with universal healthcare. It’s fraught with hidden costs. Take parking for example. During India’s last stay our parking cost over $200.00. This was with a discount card. The regular rate is $611.00. We only found out about the card by accident. The hospital administration assumes everybody knows. India’s latest drug costs about $800.00 a month and is not covered on the Quebec plan. We have applied for special status as a patient of exception but I’m not sure we will have to. It doesn’t work. In fact, it lengthens the time her seizures last. In the end it’s not the financial burden, it’s the psychological repercussions that take the greatest toil. For me, it’s the strain of not having a diagnosis. Of course, theories abound. But she doesn’t seem to fit any completely. Why does she have so many different kinds of seizures? What is this tremor that stops her from walking and drawing? And why can she throw and catch a ball perfectly but not use a spoon?

Naturally each time India visits a new specialist or begins another treatment I allow myself to hope that this time we will find the answer. I should try to guard my emotions, the constant ups and downs are difficult to endure, but I can’t help myself. If I had a diagnosis obviously it might be easy to accept or understand my daughter’s condition and go about making the necessary preparations. Instead it seems to me that we’re perpetually stuck in limbo, balancing precariously on the boundary of Hell, hoping for some sort of reprieve.

Thankfully because of our most recent hospital stay, we can now rule out a list of progressive and metabolic diseases. In medical dramas like “House” or “Grey’s Anatomy” test results return immediately, in my experience they can take months. Much of India’s testing was done at labs overseas. We waited a year for one result. This disease, which thankfully she didn’t have, had a particularly horrible set of symptoms including dementia and blindness and a very short life expectancy. It seems to me it might be important to get those particular results quickly. Presently we’re waiting for the results of an experimental genetics test that may help us identify India’s illness. I try not to dwell on this. Occasionally though, I let myself to daydream this test will lead us to right medication. But most of the time I just worry.

The little kitchenette on the fourth floor is where the mothers of the regulars meet. We chat as we reheat meals, pour glasses of water, boil water in the microwave. (Rumour has it there was a kettle but it was stolen.) We lean against the counter and talk openly about failed treatments, drugs, doctors, and the system. These are the first talks I’ve had in years with other mothers that are completely comfortable. Here nobody ever asks me how India is doing in school. They understand that sort of thing is the least of our worries.

The other day I overheard a new mother tell her friend that she was getting rid of her cat. She said she had to. Sometimes she got mad at it and she didn’t want her baby to be exposed to anger. It took all my self-discipline to keep quiet. What the Hell is going to happen the first time someone shouts at this child? Or, when the child first experiences rage? I find this kind of approach to child rearing—and indeed life—terrifying. Anger has a bad reputation because we link it with violence but it can also be life altering. Not that long ago, I read in the journal of the American Psychological Association that many psychologists believe constructive anger can be a catalyst for transformation especially in situations where there’s injustice. It can in writer, Allen Elkin’s words be “activating and mobilizing.”

At times I find living in a society devoted to life lessons and positive slogans very demoralizing. This is especially true of slogans that follow a philosophy of karmic justice. Not that long ago, when India was very ill—her seizures were so constant she couldn’t finish a sentence—there was a post on Facebook that read something like, “You get what you deserve.” Even though I don’t believe in karmic punishment it really upset me. This kind of statement basically implies India deserves to be sick. As a friend of mine who’s suffered more than her fair share of loss, recently said “Sometimes bad stuff happens and we don’t know why.” Don’t get me wrong, I’m not against trying to find the good in a bad situation or, being an optimist. But believe me, there’s absolutely no life lesson that I could ever want to learn at the expense of my daughter’s health. Sometimes there is no upside, no matter hard you look and the pressure to find that upside can leave the wounded party feeling even worse. At times it feels as though it’s placing the blame on the victim themselves. As if it’s their fault they’re sick because they didn’t have enough faith, hope, or some kind of higher connection with God.

So here we are in July and yes, we’re still in limbo. There have been some improvements. Intellectually India is more her usual self. She’s back to telling jokes and trying to learn Korean. Nights are difficult. She’s often plagued with worry. She scrutinizes every sensation in her body, scared that it’s a sign she’ll have another big seizure. We try to reassure her but I don’t think she believes us. Why would she? We were wrong about her last attack. She still can’t walk or use her hands. Often she asks us why she can’t walk? I wish I knew the answer. It makes me angry that I don’t.

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37 Comments Add yours

  1. Andrea says:

    Thanks for this posting, Lesley. It’s beautifully written. I read it out loud to my family tonight and we are all sitting here, thinking of you.

    1. onmefall says:

      Thank you. I appreciate you taking the time to read it. I promise to keep you posted.

  2. Tori says:

    Raw and honest. Thank you for sharing. Big love to all of you from someone kinda on the same river, different boat, same feelings. Xo

  3. Mindreader says:

    You are a kind, wonderful woman. Miss you and hope to see you soon.

  4. clift says:

    Hi Leslie

    Fucking hell! This post answers my earlier Facebook question. I can’t even imagine how hard this must be on the three of you. Your blog is excellent. Would you be interested in writing something for the Sydney Morning Herald online about the deranged logic of simplistic karmic slogans in light of your current circumstances? Basically rejigging the blog entry to fill in the background and fill out the “anger is an energy” – thank you Public Image – angle. Email me directly for details: mlaube@fairfax.com.au In the meantime, my heart’s breaking for you and India. This just horrible. I’ll be thinking about you. Xo

  5. Pamela says:

    oh Lesley – wish I was closer to just take some time to chat. I will send you some smiles on the wind and laughter in the air.
    Pamela

  6. katietallo says:

    Hi Lesley, your story is heart wrenching and powerful. I’m a friend of Vivi’s and she sent me the link to your blog. I wish you and your daughter peace and health. I told my mother about your story and she knows of some programs that cover prescription drug expenses. One is through Health Canada – it’s called the Special Access Program (SAP) and she also said that she’s pretty sure Trillium has a program that can help as well. Best to you and yours.

    1. onmefall says:

      Hi Katie,
      Thank you for your letter. It was nice of you to write. Please thank your mum for her advice.
      We live in Quebec so Indy’s drugs are generally covered by the drug plan. (She’s on four.) She was on a drug that was an exception to that rule. India was awarded special status as a patient of exception which means this drug is now covered. However this drug was making her much worse so she is no longer on that treatment. Her new drug is covered by the Quebec plan. We used the Trillimn plan when we lived in Ottawa. This organization helps a lot of people. I’ve never heard of the Special Access Program. I will research in case we have future need. The new drug is helping. She walked with support from her father yesterday from the bedroom to the bathroom.
      Once again thank you for your kind words and interest,
      Lesley

  7. ek says:

    Hi Lesley,
    I was so moved by your story and was struck by so many similarities with my sister-in-law. I wonder if the doctors have mentioned Ramussen’s Encephalitis? I know it might be innappropriate of me to offer transcontinental medical suggestions, but the symptoms you are describing for India are exactly what my sister-in-law was showing, and it took many years for her diagnosis to finally settle on this very rare disease. You have a beautiful daughter and she is very lucky to have such wonderful parents to go through this with her.
    I hope for all the best,
    Emily

    1. onmefall says:

      Thank you for your letter Emily. It was kind of you to think of me and my family. I think she was tested for Ramussen’s. She’s been tested for all the progressives. But I will double check. All this is so hard and so difficult on so many levels.
      Take care,
      Lesley

  8. Vix says:

    hey what a powerful story – I read it in the SMH in Australia – I have been through a similar situation with my sister – All I can say is God does love you all and you there is no “higher” relationship that could fix this – I hope you have a relationship with him – it is what has sustained me through my sisters illness.
    Hugs from across the sea and you have been added to our prayer list
    Vix

    1. onmefall says:

      Thsnk you for keeping us in your heart.

  9. Jaclyn says:

    Just wanted to wish you, Mark & beautiful India all the best and hope that a concrete diagnosis for India’s illness and a treatment/cure is forthcoming very soon.

    1. onmefall says:

      Thank you for taking the time to read. Thank you for your well wishes.

  10. EpilepsyU says:

    We are very amazed at your strength and we love your writing style! We posted about this blog on http://EpilepsyU.com and our Facebook page.

    1. onmefall says:

      Thank you for getting the word out. I appreciate this a great deal.

  11. Patty Hood says:

    I am a new reader brought to you through Epilepsy U. Your words convey the searing anger that I, too, feel is healing in its ability to keep the wound you bear cauterized and enable you to continue being present to your daughter. I will continue to follow your blog and am grateful to have found you.

    1. onmefall says:

      Thank you,Patty
      I hope you continue to enjoy our blog. Please pass it on.
      Lesley

  12. chrispack says:

    Oh Lesley, my daughter in law sent me this and reading it brings back so many memories for me. My daughter also went through a similar experience. She was diagnosed with epilepsy at the age of 17 but it took a long time to find any drugs that would work and then they only did for a while. She got progressively worse as time went on and was eventually diagnosed with Rasmussen’s Encephalitis when she was 25. She spent many, many months in hospital. One stay was 9 months long, 2 months of which she was in an induced coma. She had a left occipital lobectomy and was left with a trache and a peg so she could no longer speak, eat or walk. She had so many seizures each day we lost count, but they would number in the hundreds. She was an extremely intelligent, energetic girl before she got sick and I can relate so much to the feelings you have about watching your daughter deteriorate before your eyes. My daughter also had many falls. One particular day, she had a number of falls and chipped her front tooth, had a black eye and grazed her forehead and arm. That afternoon was the day she was admitted to hospital for that very long 9 months. We also tried the ketogenic diet but it just made her very sick to her stomach. We tried plasmapheresis and so many medications and combination of medications, with extremely high dosages, but none seemed to work.
    I wish I could tell you we had a good outcome but unfortunately that wasn’t the case. I hope, with all my heart, that you and your daughter get through this and they find something that works. Just know, there are people out there supporting you and also people who know exactly what you are going through and the feelings you have. There are no reasons I could find why this happened and no quick answers. Who knows why this happens to good people, I have never found the answer. Someone posted something on facebook the other day which read “you know you’re a good mother because they are still alive”. I found this very upsetting. I think I was a good mother and I tried everything I could to help my daughter but none of it changed the end result. I hope this doesn’t upset you, it was not my intention. My daughter’s case was extremely rare but your story moved me so much that I just needed to share mine with you.

    1. onmefall says:

      Thank you for sharing your story. It made me very sad.
      I will keep you in my thoughts.
      Love
      Lesley

      1. Susan Moriarty says:

        Dearest Lesley

        My daughter is 15 and she is the sun, the moon and the stars to me like your beautiful India is to you. Since Elena’s birth, I have lost any objectivity when it comes to the suffering of children. Your tender story has been reproduced in today’s Sydney Morning Herald and there are (currently) 44 well-meaning Australians who have been moved by your eloquence to write expressing their tears, love, support and care for you and India. If there is anything I can do for you, if you need letters written to your Health Authority for further funds for research & development, for a special forensic service, please let me know and I’ll write those letters to your political representative. If there is anything else that I can do which I haven’t thought of here, you have only to ask.

        With tenderness
        Susan

      2. onmefall says:

        Dear Susan,
        I’m moved by your kindness. I will certainly take you up on your offer if I need help. I’ve been so touched by the well-wishes I’ve gotten from Australia. I can’t tell you how good it makes me feel. Thank you. Lots of love to you and your girl.

  13. Juliette says:

    You are an amazing woman, telling a very hard story with beauty and grace. My thoughts and prayers are with you, Mark and India. I know the anger you talk about, and hope it gives you the strength to keep standing, the fire to keep fighting and the knowledge that you have something worth all that you are going through. May all the goodness from the people who read your story make its way to your family and bring you all that you deserve – a diagnosis for India.

    1. onmefall says:

      Yes, please send us a diagnosis and a med or therapy that works. Thank you for taking the time to read.

    2. onmefall says:

      Thank you for your support and for taking the time to write.

  14. Shweta says:

    May god make your daughter well soon…not only that but give you peace in this hardest time of your life…

    1. onmefall says:

      Thank you for your kindness.

  15. Kate says:

    still no answer? reading this really reminded me of a friends daughter who became ill at only 1yr old, it all began with seizures too. eventually it was discovered she had a rare genetic disorder, mitochondrial related. she fought hard but little Stella lost her battle a few months before her second birthday.
    http://stellasgalaxy.blogspot.com

    i hope you find the answers you need. x

    1. onmefall says:

      Hi Kate,
      I feel so badly for your friend. What a terrible disease. My heart goes out to her and the loss of her beautiful girl. India has been tested for all the progressives and the metabolic epilepsies. The results were all negative. We are waiting for the results of one more test. We hope this holds the key. Thank you.

  16. Monique King says:

    Hi Lesley,

    one of my kids experienced atypical absence type seizures which started around your daughter’s age and disappeared around age 17. The seizures happened many times a day, but were atypical. Drugs were ineffective and in his words “zombified” him. He couldn’t stand it anymore and weaned himself off the maximum dose of Epilim which was not having any effect, to a minimum dose of Tegretol, which seemed to help.

    One day the seizures just disappeared, and he then weaned himself off Tegretol. He had no more seizures until he was nearly 20, when over three days the number of absence seizures gradually increased. He refused to return to the doctors.

    I had met a kinesiologist some months before who had given me a flyer. My son had two sessions with the kinesiologist and has had no more seizures in the 5 months since. Only time will tell if the treatment has worked for my son. Let me know if you would like the contact details of the kinesiologist.

    Sincerely,
    Monique

    1. onmefall says:

      Hi Monique,
      I appreciate you sharing this with me. We found we had some good results working with a physiotherapist. I wonder if this is related. I will do more research. Sometimes I wonder if this will all one day stop at other times I worry that she will never be able to live on her own. I hope your son continues to stay healthy.

  17. Cindy says:

    I read your story today in the SMH in Australia and it touched me enough to follow the link to your blog. There is nothing I can say or suggest to make this any better other than I hope a diagnosis is found soon and your questions begin to gain answers.

    1. onmefall says:

      Thank you for thinking of us.

  18. someswari says:

    I agree with you (each word). Right now, i am going through similar kind of hell, in and out of clinics for finding an answer, for my little daughter. Some what ok to know that i am not alone feeling this anger about my helplessness to get her better like she was before.

    1. onmefall says:

      I’m so sorry that you are going through this. It’s heartbreaking. I hope your girl gets better soon and that you get the proper help. Thank you for your letter.

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