Mar 162012
 

An elderly gent said to me: you look…you look alive!

This gent has known me a long time, starting in what I call my hell years after I had suffered a closed head injury aka traumatic brain injury. Back then, I used to see him weekly, yet when I spotted him one time in a different place, I recognized his face but could not remember his name or where I knew him from. Slowly I improved. And last year, he told me how much I’d changed since then, how I’d come alive, how I was alert, how happy he was for me. But early this week he was astonished to see something dramatically different in me and had to come up and tell me about it. He didn’t have the exact words, but it had captivated him and “alive” was the best way he could describe it.

The next day, my father commented that something had changed. He thought I was calmer, but I had been calmer for awhile (it had begun after I instituted my “hypothalamus fix”). Still, it was a close descriptor, I think, to what had happened.

The next day, a woman who didn’t know either man, said the same thing. She too said she’d seen me come alive slowly over the past several years. But this week, something different, something dramatic had happened. She too was excited to see it.

One person wondered if it was the new research study drug I was taking, the one the new sleep specialist had recommended that is supposed to reduce my pain and improve my sleep. But this drug is supposed to take awhile to take effect, my pain and fatigue levels are the same as usual, going up and down as usual, and as of when the elderly gent saw me, I had been on it only a few days. Plus the change had begun before I was even given the study drug. I had said to my acupuncturist last week, for the first time ever, my mood is OK. You don’t have to treat it today. And she concurred. She treated my pain and fatigue and suggested a longer interval between appointments.

What an amazing, dramatic improvement that even I could feel it.

I believe two things happened that made the change in me.

When I conducted my research for my book Lifeliner, I realised that Judy Taylor had survived and thrived for twenty years without eating for four big reasons, two of which were support: medical team support and family support. Of course, for Judy medical team support was vital, for without it she would die. Still, many people on TPN (total parenteral nutrition) today mayn’t be able to get a hold of their doctor outside of office hours and be forced to go to emergency if they have a problem, where they’d have to suffer delayed treatment while they explained their artificial feeding and the special requirements it entails. Not very supportive. Judy never had to worry about that. Whenever she was in trouble, she knew that her doctor, my father, had her back. It would be him she called, him in the emergency room seeing to her care. And then there was her husband. She knew with no doubt whatsoever that he would never abandon her, no matter the cost. In an emergency, she could count on him immediately zipping her down to the hospital; in daily life, she didn’t have to worry about being taken care of financially or about having a solid roof over her head. That kind of unquestioned support makes life possible and makes one feel loved, no matter how much the body is scarred and infirm. And so I knew how important support was to health when a person has a chronic illness or injury.

That’s the two things that changed for me.

1. Medical team support: I finally found last year and was able to secure a spot with a psychiatrist (whom I shall call “neurodoc”) in Toronto Western Hospital’s acquired brain injury neuropsychiatry clinic. One of the first things he said to me in the Fall with great firmness was that I could see him for as long as I needed. There was no end date. I understood with my head, but it was not enough for me to accept. You see, the best of my doctors had not stuck with me. They took me as far as they could go then discharged me, for curiosity and acquisition of knowledge to treat my particular pantheon of injury sequelae was not in their cards. Most doctors though told me “this is what I think, bye,” with what they “thought” not being very helpful to me. This month I saw the sleep specialist my neurodoc had referred me to. It was a case of I will believe it when I see it, that I believed that the referral was real. Then when I actually saw him, he emphasized at least twice to me that he would not usher me out the door if he could not solve my insomnia. He said he would support me and gave evidence of how he does support his patients, how persistent he is, how he doesn’t usher people out the door. For the first time in years and years, I felt supported by a medical team – my medical team of two physicians. I relaxed. That’s why I say I don’t think it was calm my father saw – it was relief. And it was relaxation. I no longer have to keep a vigilant eye on my health, to monitor the effect of any treatments or diet or exercise changes, to scan daily my Twitter feed or articles that come my way for solutions. Two shrinks are now taking care of that for me. Not in all areas, tis true, but in enough that it’s an humongous relief. Amazing relaxation.

2. Family support: For several years — except from every professional I saw for my health care (not insurance), whether therapist or psychiatrist — I heard without fail from most everybody in my life that I was malingering, that I must get over it, that I must move on, that I was depressed, that I was wasting time on health care instead of working. The insurance company and almost all of its hired medical mouthpieces (oh sorry, maybe I should have said independent medical experts) labelled me with anything that they could get away with – until my lawyer and proceedings debunked them, in which case they moved on to another label, except the true one: closed head injury. It was so bad that even though every professional who diagnosed and treated me said it was so obvious and I was so typical in my symptoms and functional problems that I had had a brain injury, I began to take on that malingering label. And it stayed plastered to the walls of my psyche. And then my neurodoc invited my mother to an appointment and asked her if she thought I exaggerated my symptoms, my pain and fatigue. She said “no” so quickly, there was no room for doubt. In that answer, for the first time, I had heard a family member say out loud I was truthful, that my symptoms, my functional problems, my difficulties were real, that I was so not a malingerer. I was the opposite. Saying it out loud is like shouting compared to the whispers of slowly evolving actions and email. The chains around my heart released and fell off with a clatter. The burden on my shoulders rolled off and disappeared into the maw from whence it had come. My muscles unclenched from their permanent defence against years of accusations.

That release is what everyone saw so clearly in my face, my posture, my walk, my health. Support is essential. When you withhold it from a loved one – and a patient when you as the physician make yourself unavailable or usher your patient out the door because you don’t want to think outside the box and extend yourself – you condemn the suffering person to carry a burden they can never lift off of themselves. And that burden retards healing.

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  • Brenda

    Wow, so glad that you have THAT support, You are right, I dont have it, as so many HPNers dont, WE[royal] connect up our feeds, hope its the right mix, hope that we dont infect ourselves, and hope that nothing goes wrong, the trying to explain to the ER, who only want blood and gore and easy to treat one hour illnesses, is worse than any feeling ill.
    I am sure your father needs to pop down to the southern hemisphere for a few years in his retirement… we need to try and clone him.
    Meanwhile I am very happy that you are getting more than a weak candle light at the end of your tunnel
     

  • LOL @ blood and gore! You’re so right. It isn’t as good here anymore either as when Judy was alive and Dad in charge. Yes — we need to clone him! Other doctors need to know how TPN (HPN) is both a lifesaver and potentially fatal if not monitored properly and problems responded to immediately.

    Me too. I couldn’t even see that weak candle light till recently! (My mother also said she could finally see the light at the end of the tunnel. With two people saying it, it must be true. 🙂 )

  • Brenda

    Do I ever fibber-ish to you???????  [nu word]

  • No, never! 🙂 I like the new word!!

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