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Courage

Friday, March 16th, 2012 by

Trigger warning: needles

The first time I ever stuck a needle into myself was four years ago. I was twenty-two. I was terrified. I had just been diagnosed with yet another enigmatic, difficult to treat medical condition, and I had been prescribed a medication that required a subcutaneous (or sub-Q) injection, a shot into the layer of fat under the skin. After a long and tedious diagnostic process, I was looking forward to feeling better, but I was still petrified by the idea of that first needle stick.

I felt completely unprepared to administer it. No one wanted to show me how to properly do the damn thing. I knew there wasn’t a huge risk associated with subcutaneous injections–as far as methods of administering medications go, they’re pretty benign, apart from the sharp pointy bit going in your skin.
Last summer I had two of my friends put ten needles into my back and lace them up with ribbon.  I didn’t particularly enjoy it–I’m not much of a masochist–but it didn’t bother me that much either. It was painful, but not terribly. It was emotionally uncomfortable, but no more so than many of the medical procedures I have endured. It was a little weird, a little scary. But that’s okay. As someone whose body has endured quite a bit in the name of medical science, I feel the need to balance that out by making art with my body.What I enjoy about artistic BDSM like decorative needle play is the chance to make a point. Putting needles in my back and lacing them up with ribbon is aesthetically pleasing and emotionally unsettling; when onlookers squirm with discomfort, I ask them: Why is this more upsetting to mainstream society than labioplasty? Or high heels? Or any other way people torture their bodies in the name of beauty?

But I digress–back to medical needles.  My specialist couldn’t show me how to do the injection because of insurance reasons. My general practitioner didn’t want to do it because she felt uncomfortable dealing with specialty medications. The pharmacist wouldn’t show me how to do it because that wasn’t his job. I felt like of all of these people, all of whom were supposed to be on my team, no one was willing to go to bat for me.  None of this did anything to assuage my fears. While I was used to getting needle sticks–frequent blood draws will do that to you–I still wasn’t entirely comfortable with the idea of them, or the sharp pain that went with.

My specialist was the one who finally caved and extended me some kindness, the one to show me how to do it. She was very reassuring and willing to accommodate my uncertainty. First we practiced with some saline solution. I think I did it on an orange before I gave it to myself. She showed me how to uncap the bottle and disinfect it with alcohol. She showed me how to unshield the needle and draw up the liquid. She told me to hold it at a 45º angle to my skin. And then she told me it was my turn to do it.The moment of truth.

And I don’t remember it. I know I gave it to myself on the left side of my belly button and that it burned and was red afterwards, but it often burns and is red afterwards. The terrifying event itself–the poke in the skin, the push of the plunger–I have no memory of. I have given myself the same injection every night (more or less) since then. The memory of that first time has been blurred, washed away by a long and steady, day-by-day, stream of the same action.

I don’t remember the injection itself, but I do remember what happened afterwards with astonishing clarity. I remember being in the car on the way home with my mom. I remember the intersection we stopped at, because that’s when I started to panic. My heart raced and my breath came so fast and shallow that I wondered if I was having an allergic reaction to the medication. The hard part was over, and yet I was still terrified. That first needle stick that had scared me so much wasn’t such a big deal; what it represented was. It meant a big change in my life. I felt scared and alone and overwhelmed with uncertainty of what my life was going to be like in the future. I felt weak and not at all brave.Needles have become mundane to me. Over one thousand injections later, the stick is still as painful as the first time. I barely notice it. It doesn’t phase me. It’s not because I am brave or tough or special. It’s because, if anything, I am normal. I’m human. The only super power I possess isn’t very super at all, but normal human resilience.

Soon, I will have to face another medical fear of mine. I’ll be getting a peripheral intravenous central catheter (PICC) line, a semi-permanent IV line that will start at an opening in my arm to snake through my veins into a major blood vessel and finally rest in my heart. This will be a contributing source of fluids and nutrition for me for the next two months, as my gastrointestinal tract can no longer do its job. There will be machines and bags of nondescript stuff that doesn’t intuitively seem very nutritious. There will be a hole in my body, and so there will be dressings to be changed and care to be taken not to infect the line, as line infections cause death in 15% of patients receiving this kind of nutrition. A bigger deal than a self-inflicted needle prick, to be sure, but you’d think with all I’ve been through, I could handle it. But I’m not that resilient. That statistic rings in my ears and hammers in my chest–I have a very real fear of central lines, because they end in your heart, and I need that thing to work, goddamnit. It’s one of the few parts of me that does these days.

People tell me “you’ve been through bad stuff before, you’ll be okay” and I want to hit them. I might be okay, eventually, I will probably be okay, eventually, but right now I am exceedinglynot okay. I’m suddenly transported back to that intersection in the car with my mom. I’m that twenty-two year old girl, feeling scared and overwhelmed and unready for a big life change. I feel weak and powerless and needy–all the things I hate feeling.

If courage is the ability to choose to face your fears, then strength is the quality of simply being able to ignore them. I don’t think of myself as being a particularly courageous or strong person. I’m just a person.  A person who gets terrified of what the future holds and who tries to calm her fears and handle things as best as she can, but who still melts down and cries and gets unnecessarily angry at people.  A person who writes emotional blog posts to try and process all the overwhelming things that are happening to her.“How do you keep going with all you have to live with?” People sometimes ask.

I always respond: “You keep going because there’s nothing else to do.”

6 Responses to “Courage”

  1. BadMouseM says:

    Needles are a major phobia of mine and I get a feeling very much like what you describe whenever I am faced with them. Years ago I turned to BDSM as a way of confronting that fear, and it has helped– but only to a point (pun intended).

    We have grown close over the last couple of years (your photo above is a reflection of the honor you have bestowed upon me) and I have learned a great deal more about your health problems than I ever thought possible. I understand that you don’t feel strong. But just being an ordinary person under such circumstances, and doing so while being creative, productive, brilliant, humorous, appreciative, beautiful and loving are the reasons that so many of us care for you. Whether you can feel it or not, we want you to have strength, to draw it from us whenever possible, to find it within yourself as much as you can.

    One day at a time.

    I am only a phone call or a text away. If you need me for any reason, I am almost always available to help. Or listen. Or just hold you while you hold on.

    All my love,

    M

  2. BadMouseH says:

    My gut reaction to this is, “Wow, this is terrifying.” I have never really faced anything like this. I wish I could give you better words of comfort.

    I once had to go through what I guess was considered major surgery. I’m not sure how I came up with this idea, but to cope, I decided to tell myself that what I was going through was a new experience I’d never had before. it was like being on a ride at an amusement park. It might be a scary ride with parts I hated, but once I was on, like a roller coaster ride, I was committed–I was going to experience it all, fun, scary, thrilling, and awful. So when the day of surgery came, at some point, I gritted my teeth and “got on the ride.”

    This approach worked for me, in that particular situation. I told a friend about it when she had to go through breast cancer surgery and the subsequent chemotherapy and radiation treatments, and she said that the approach helped her cope too.

    I hope this is helpful. It’s a bit harder to do when it seems like the ride never ends. but maybe it can help you through specific procedures.

    You will, as you say, keep going because there’s nothing else to do. And I’ll worry about you until you’re safely off the ride. But you know what it means if I worry about a person. <3

  3. Lily says:

    Wow. This really sucks; God knows life is hard enough without these kinds of extras.

    I remember when I was really sick, what a confusing, frightening thicket everything was. I mean, I think people think: you get sick, you get a diagnosis, you take whatever treatment is the right one — but the process is far less straightforward than that. At every step there’s all this uncertainty about what’s going on, what the right thing to do is, and what’s going to happen. A lot of my emotional discomfort was just trying (and often failing) to tolerate all the uncertainty.

  4. [...]strength is the quality of simply being able to ignore them.

    This means a lot to me. It frequently irritates me to be praised endlessly, lauded and celebrated at “so strong!” because I’m — what? Still alive? Still going? Indeed, you keep going because there’s nothing else to do, and I’ve never thought that makes me strong or brave; it makes me human.

    But framing “strength” in that way makes it much easier to avoid the typical (for me) flood of outrage and bewilderment at the wide-eyed person wondering again at how strong I must be… because they’re right. I ignore my fears and continue with my daily life. Yes, I’m often scared. I’m often overwhelmed by that fear, but if my only options are being afraid and doing nothing, or being afraid and doing what I need to anyway… well, I’m not capable of truly doing “nothing” so long as I’m alive, so I keep going.

  5. Michele M says:

    Hugs to you. I haven’t been on the receiving end of TPN or a central line. I have taken care of one in a loved one though and experienced on some levels the feelings that come with it. I also know the fear of infection in the line and the day in day out internal struggle (at times) with that fear. In my experience it was a Hickman catheter though and not a PICC line. Hopefully since you are in the hospital you can get the essential education so you don’t have to struggle as much as you did with the other.

    The TPN is extensive and hopefully you can adjust to it without too much struggle. I’m sorry things have gotten to this point but with a rest maybe things can improve again. Getting the nutrients is so important too and will help with the emotional rollercoaster ride that comes with these experiences as well as not being able to feed your body the way it needs.. It always amazes me how much not eating or not being able to eat affects me emotionally and the whole struggle around food drains me a lot (even though my issues are different from yours).

    I like quotes so I figure I can close with a couple around the themes of strength. I know that feeling all too well myself.

    Continuous effort – not strength or intelligence – is the key to unlocking our potential.
    Winston Churchill

    The difference between a successful person and others is not a lack of strength, not a lack of knowledge, but rather a lack of will.
    Vince Lombardi

    One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.
    Albert Schweitzer

    It is only necessary to have courage, for strength without self-confidence is useless.
    Giacomo Casanova

    Feel better soon!!!

  6. Chris O'Sullivan says:

    What do you call a grown-up who is afraid, cries, panics yet keeps moving forward when the odds are stacked against them?
    A Marine.

    Courage is not lack of fear. Panic is a transitional moment when you realize that the shot is hitting the fan. Tears wash away the loss of what might have been on a river of grief.

    Emotion is what our minds use to absorb change and shock, to bend in place of shattering. Even forgetting helps us stay sane when pushed beyond endurance.

    Stay you, even when you change,

    Chris

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