Use Your Voice

   “You have to use your voice, even though it hurts,” insisted the bubbly nurse in a commanding yet not unkind way. I had just had my thyroidectomy and was in a lot of pain.

    I tried to respond. A string of unintelligible words, barely above a whisper escaped me. My voice was hoarse. My throat was sore.

   “You have to use your voice, dear. Even if it hurts. That is how you will heal and otherwise how will we know what you have to say?”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

October 3, 2014

I recently told a friend that I am starting to say what I think and not be as intimidated about the negative pushback I might get. I do not mean speak in an unkind way, and not like an unfiltered string of thoughts, but more that if I strongly believe in something and that if by saying it, some good can come out of it, I am getting more comfortable being the person who voices those concerns.

Among my close family and friends, I am known as someone who has strong opinions. In a classroom, those opinions do not come out quite as strongly. In a more public forum, even less so. I am more likely to stay away from controversial topics. I ventured into global health work on HIV/AIDS and when it comes to orphans and vulnerable children impacted by HIV/AIDS, the topic is still considered a relatively safe area, i.e. less controversial. It would be more difficult for me to explain my work around HIV/AIDS among sex workers or injecting drug users because this area is still highly stigmatized. However, it is exactly that stigma, discrimination and judgement that I do not subscribe to.

More recently, I have often asked myself, why don’t I feel like I can speak up when I want to?

Black Sheep - Feeling out of placePart of it is that I don’t exist as a single entity. I live in a society where people have differing values, I come from a culture that has its own traditions. The religion I was brought up with does not condone sex outside of marriage, drugs and even tattoos. I am a part of different communities, each of which has value to me and provides me with something beneficial. Even if I have different opinions or thoughts from people, it doesn’t mean I do not care about them or do not want to maintain some sort of relationship with them. At the same time, voicing my opinions can inevitably mean that they view me differently. I may not be who they thought I was. But in more ways than one, I am still the same person they’ve always known. It is a very very tricky thing to navigate and that feels like a gross understatement.

Disclosure comes in many different forms – even stating that I have cancer is a form of disclosure. If we want to share, when and how is the right way to do so? When does what we believe or what we are going through need to made public? When does the work we are passionate about become a reflection of us? When do we share our thoughts at least with those closest to us? Who do we consider close enough to us? Cancer is less stigmatized than many other health issues and so easier to come out with, especially to a diverse group of people – who identify as being from different races, ethnicities, sexual orientations, religions, ages, genders, geographic locations and cultures. Cancer crosses these social boundaries better than other health concerns do. It sometimes feels like I can’t be myself completely in certain circles and that is disconcerting and frustrating. I am working through it and trying to figure out where I fit. It comes back to being confident about who I am and by extension, the work that I do. Thinking through my beliefs and my prejudices and my assumptions and making sense of it all. It is a process. Just like me going through cancer is a process, one that is in many ways, changing how I see myself and making me think about who I want to be.

The nurse gave me some good advice when she told me to use my voice, even if it hurts. I’m trying.

If you like what you read, please share.

20 Responses

  1. Pingback: The Girl Who Was Told Not To Question | Nadha Hassen | Public Health, Social Justice & All Things Community

  2. Anonymous says:

    I am leaving this blog comment here, this is out of place for this blog entry, I would have to find the relevant blog entry in which you mention that the doctor or nurse never asked how you were dealing with your disease at an emotional/mental level. I am not a doctor, my wife is training to become one and last year I lost my father and there was time during which he was admitted in the hospital and I wish i could connect with the surgeons/nurses at an emotional level and tell them what I was going through. But I think perhaps there is a reason they leave that gulf, one thing I know from my wife is that they are trained not to get involved with the patient at an emotional level. Also given they would try not to get involved at a mental/emotional level, it might not be effective for them to try to alleviate your emotional/mental pain. Also I could see why they are trained this way to not connect with the patients, for instance if you’d be operating on someone you love dearly perhaps you’d be scared to death and this might make the work at hand hard toaccomplish, also perhaps because they have to see hundreds of patients in a day and if they start connecting with each one of them, it might end up breaking them as a person.

    • Nadha says:

      Thank you for your comment(s) and for sharing your experiences. The relevant post is perhaps this one? -> http://nadhahassen.com/post-operation-for-cancer-finding-the-new-normal/
      I read through your comment with much interest and you’re right that there needs to be some professional boundaries. Many say this could also be in the best interest of the patient – I know that my mother as a physician/surgeon says she would never want to operate on a family member or friend.

      I did not make the distinction in my post (thanks for pointing it out) and what I was getting at was not just someone, anyone to talk to, but someone specifically trained to deal with the possible concurrent mental health concerns of a physical disease, e.g. post-surgical depression. This could be a counselor, social worker, therapist etc. I do think it is possible for health professionals to recognize the importance of mental health and direct patients and their families to resources appropriately. Perhaps, at least during post-op assessment, there can be a few questions about how I’m faring or my mood in the last few days. I hope that clarifies what I was getting at but obviously, implementing this in practice would require more nuanced thinking.

      • Anonymous says:

        I see what you meant now, the medical system in canada is so broken and we dont even have enough doctors in the pipeline that my thoughts did not automatically wander to a counselor or a social worker or a therapist for post surgery/medical trauma.

        You are right, arranging a counselor would definitely help. But then again I think this whole system is broken at so many levels. My aunt happens to be a radiologist and works at a hospital and she was telling me how a 32 year old guy died of a heart attack while the reception at the emerg asked him to wait in the waiting area for his turn, then I personally have witness a girl in extreme pa;in from uti not being attended by anyone for over 1 and half hour because there was just one doctor in the emerg and a line of patients waiting to be seen, also because you are not allowed a bed in the emerg till your turn comes, she was lying on the floor, she seemed to be in a lot of pain. Then I have witnessed a guy in his 60s complaining of chest pain and shortness of breath and when he tells that to the reception, the reception asked him to wait for his turn.

        Then the hospital system is such a black box, there seems to be no feedback loop between the doctor and the patient/ people concerned about the patient. The system has technology of the 90s (I am talking about crm and IT and not surgical tools) and while some health hackathons take place I am not sure if much comes out of it . It is ironic how we have facebook/twitter/linkedin to keep up with eachother on one hand in our day to day life and an ‘information black hole’ when it comes to the goverment departments like immigrations, health and even finding a family doctor. God forbid you have to require government assistance in finding a family doctor. A couple of years ago I had to find a family doctor and I registered with a government program which promised to hook me up with a family doctor near my place and guess what, I havent heard from the program ever since :) . Thank god I continued my own research in parallel and within a month I registered with the program I was able to find a family doctor on my own. A lot of my colleagues at work are in similar problem, they either dont have a family doctor or their family doctor is old and now they are dreading to go through the hassle of having to find a new one.

        And this whole craziness of having a strict quota on the number of doctors in the system when we are understaffed and perhaps except for the main cities a lot of places might be lucky to have any doctor at all. All I can say is that be whatever country, common/poor man is always treated like a dog regardless of time and space.

        • Nadha says:

          Thanks for “using your voice”. The stories you relate make me sad. It is so unnecessary, especially in Canada. You pointed out so many issues that I myself have thought about – the technology, the family doctor issue, the quotas, the understaffing, ER and triage issues. This black box you talk about is also a big concern. Don’t get me started on attracting qualified medical professionals into the country and then not delivering on integrating into the system.

          I’m glad you brought up these concerns because Canada can be seen (especially from the outside) as having impeccable medical care. Sure, there are good things, but there’s a lot of room for improvement and a need for change.

          • Anonymous says:

            Why sad though? On a positive note, perhaps god placed you here and made you go through this so you can experience the nuisances in the system first hand and then help cure it. :) . We are all here for a limited time frame anyways, and are hosts to the future generations and we should perhaps give a try to leave the world a bit better place for them. This thought of making a change has always been a mental turn on/inspiration for me, although at this point in my life I am perhaps not much more than a cog in the wheel. I guess very hard to break out of the system and cause a dent in it.

          • Anonymous says:

            I mean wouldnt it be boring if everything was perfect/optimal and there was nothing to change and no room for improvement. Perhaps this challenge/room to improve/learning through failure is what keeps most of us going. Precisely that we are far from perfect and there is room for some problem solving and experimentation is perhaps what makes this world an enjoyable place in hte first place.

          • Nadha says:

            I like the way you think. I must admit I do enjoy the challenge of improving/striving for something. Trying to not get sucked into the system is tough, especially when trying to build up a career while figuring out where you fit and what your values are. That’s what my Masters in Public Health is teaching me. But still – that 32 year old didn’t need to die that day in emerg (sad).

          • Anonymous says:

            Perhaps if death is a continuation of life with higher conscience/greater awareness than its not bad. I hope there is life after death and that we are not just a mere accident of nature. It would be sad if we are. In any case a wonderful piece on death that I stumbled across.

            The Egg
            By: Andy Weir
            You were on your way home when you died.
            It was a car accident. Nothing particularly remarkable, but fatal nonetheless. You left behind a wife and two children. It was a painless death. The EMTs tried their best to save you, but to no avail. Your body was so utterly shattered you were better off, trust me.
            And that’s when you met me.
            “What… what happened?” You asked. “Where am I?”
            “You died,” I said, matter-of-factly. No point in mincing words.
            “There was a… a truck and it was skidding…”
            “Yup,” I said.
            “I… I died?”
            “Yup. But don’t feel bad about it. Everyone dies,” I said.
            You looked around. There was nothingness. Just you and me. “What is this place?”
            You asked. “Is this the afterlife?”
            “More or less,” I said.
            “Are you god?” You asked.
            “Yup,” I replied. “I’m God.”
            “My kids… my wife,” you said.
            “What about them?”
            “Will they be all right?”
            “That’s what I like to see,” I said. “You just died and your main concern is for your family. That’s good stuff right there.”
            You looked at me with fascination. To you, I didn’t look like God. I just looked like some man. Or possibly a woman. Some vague authority figure, maybe. More of a grammar school teacher than the almighty.
            “Don’t worry,” I said. “They’ll be fine. Your kids will remember you as perfect in every way. They didn’t have time to grow contempt for you. Your wife will cry on the outside, but will be secretly relieved. To be fair, your marriage was falling apart. If it’s any consolation, she’ll feel very guilty for feeling relieved.”
            “Oh,” you said. “So what happens now? Do I go to heaven or hell or something?”
            “Neither,” I said. “You’ll be reincarnated.”
            “Ah,” you said. “So the Hindus were right,”
            “All religions are right in their own way,” I said. “Walk with me.”
            You followed along as we strode through the void. “Where are we going?”
            “Nowhere in particular,” I said. “It’s just nice to walk while we talk.”
            “So what’s the point, then?” You asked. “When I get reborn, I’ll just be a blank slate, right? A baby. So all my experiences and everything I did in this life won’t matter.”
            “Not so!” I said. “You have within you all the knowledge and experiences of all your past lives. You just don’t remember them right now.”
            I stopped walking and took you by the shoulders. “Your soul is more magnificent, beautiful, and gigantic than you can possibly imagine. A human mind can only contain a tiny fraction of what you are. It’s like sticking your finger in a glass of water to see if it’s hot or cold. You put a tiny part of yourself into the vessel, and when you bring it back out, you’ve gained all the experiences it had.
            “You’ve been in a human for the last 48 years, so you haven’t stretched out yet and felt the rest of your immense consciousness. If we hung out here for long enough, you’d start remembering everything. But there’s no point to doing that between each life.”
            “How many times have I been reincarnated, then?”
            “Oh lots. Lots and lots. An in to lots of different lives.” I said. “This time around, you’ll be a Chinese peasant girl in 540 AD.”
            “Wait, what?” You stammered. “You’re sending me back in time?”
            “Well, I guess technically. Time, as you know it, only exists in your universe. Things are different where I come from.”
            “Where you come from?” You said.
            “Oh sure,” I explained “I come from somewhere. Somewhere else. And there are others like me. I know you’ll want to know what it’s like there, but honestly you wouldn’t understand.”
            “Oh,” you said, a little let down. “But wait. If I get reincarnated to other places in time, I could have interacted with myself at some point.”
            “Sure. Happens all the time. And with both lives only aware of their own lifespan you don’t even know it’s happening.”
            “So what’s the point of it all?”
            “Seriously?” I asked. “Seriously? You’re asking me for the meaning of life? Isn’t that a little stereotypical?”
            “Well it’s a reasonable question,” you persisted.
            I looked you in the eye. “The meaning of life, the reason I made this whole universe, is for you to mature.”
            “You mean mankind? You want us to mature?”
            “No, just you. I made this whole universe for you. With each new life you grow and mature and become a larger and greater intellect.”
            “Just me? What about everyone else?”
            “There is no one else,” I said. “In this universe, there’s just you and me.”
            You stared blankly at me. “But all the people on earth…”
            “All you. Different incarnations of you.”
            “Wait. I’m everyone!?”
            “Now you’re getting it,” I said, with a congratulatory slap on the back.
            “I’m every human being who ever lived?”
            “Or who will ever live, yes.”
            “I’m Abraham Lincoln?”
            “And you’re John Wilkes Booth, too,” I added.
            “I’m Hitler?” You said, appalled.
            “And you’re the millions he killed.”
            “I’m Jesus?”
            “And you’re everyone who followed him.”
            You fell silent.
            “Every time you victimized someone,” I said, “you were victimizing yourself. Every act of kindness you’ve done, you’ve done to yourself. Every happy and sad moment ever experienced by any human was, or will be, experienced by you.”
            You thought for a long time.
            “Why?” You asked me. “Why do all this?”
            “Because someday, you will become like me. Because that’s what you are. You’re one of my kind. You’re my child.”
            “Whoa,” you said, incredulous. “You mean I’m a god?”
            “No. Not yet. You’re a fetus. You’re still growing. Once you’ve lived every human life throughout all time, you will have grown enough to be born.”
            “So the whole universe,” you said, “it’s just…”
            “An egg.” I answered. “Now it’s time for you to move on to your next life.”
            And I sent you on your way.

          • Anonymous says:

            I must admit the knowledge of past lives in the above piece makes me feel somewhat like Avatar Ang in the last airbender ;) . Not sure if you have watched those anime, but if you haven’t I highly highly recommend it, Would take your mind off the current situation while you heal and would get you hooked on it instantly :) . Here is the youtube link.

            https://www.youtube.com/watch?v=6bIOso8r8Po

            Mind you I am not talking about the last airbender movie, that was crap. I am talking about the cartoons :) awesome stuff. I am not an anime watcher usually but this was one awesome stuff. If you havent watched it already, WATCH IT!!! :)

          • Nadha says:

            “One cup for me, one to the wall” Good stuff! And I’ve been told before to check out the airbender cartoon, seems like the right time to do so.

  3. Anonymous says:

    Can you write a blog post on how cancer has changed you/your perspectives as a person, if there are any before/after changes? And how you view the world now as compared to how you did it before? I am curious to know :)

  4. Anonymous says:

    Just a stranger who happened to stumble across your blog. Good pieces of writing on this blog, I hope you recover fast and life eases for you.

  5. Ramzeen says:

    Never realized that you could be so verbally loquacious :-D . I only knew you as a lovely kid who brightened her smile especially for me. Your achievements and citations were astonishing and then we realized that being in a country like Canada allowed you to “spread out your downy feathers and fly” like Georgie girl! Your inner thoughts go deep (too deep?) for someone your age. This is the time when the world is at your feet and you think that you’ll live forever. Try to capture that feeling – for indeed, you’ll live forever. Go for it! This is your affectionate Maama, girl ;-)

  6. Shiranthi Wijayaratnam says:

    Hi! Nadha,

    Reading your blogs is cathartic and they are therapeutic to many of us. Please keep it up.

    Love and hugs,

    Aunty Shiranthi

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