By guest writer, Deborah Marcus.
It has been weeks since my last blog post for this series. I wish I had the energy and focus to write about everything I think through! We continue to await word on the first level appeal of the denial of my disability application. I have been incredibly blessed by many with the practical support that is allowing me not to be in a panic over covering my most basic needs and treatment expenses, at least for the next few months. I don’t fully know how to express my appreciation for this, but I hope it is felt by all.
I’d like to return to an element that continues to run through this discourse, on living and dying, on choosing to continue to live rather than contemplating and completing suicide. I have written about and spoken aloud the serious consideration of suicide, the culmination of feeling like I’ve been dying for a long while, with acute awareness of this in the past few years of unrelenting facial and head pain. I do not currently have that on the table as an option, and I hope I continue feeling this way, but it does not feel like it would never be an option. I’ve come face to face with some varied and intense reactions and responses to my expressions of thought of suicide. All come from a place of love, but some also come from a place of fear, and this can inadvertently have the effect of making the one discussing the suicidal feelings—in this case, me, but I daresay it applies across the board—feel a deep sense of shame and guilt.
Brene Brown has some good talk out there about shame, guilt, and vulnerability. Here is one: https://www.ted.com/talks/brene_brown_listening_to_shame?fbclid=IwAR2YxOI-EYys4X2Pi7Qzi9k65yO79pUEw1-UQpt5KLKdxGL-91Ptje1Czbs#t-942509
There was a moment recently that ties directly to this and got me thinking about what we mean when we say that someone is giving up, when they feel can’t go on and begins to actively experience suicidal ideation and perhaps takes those first steps to make a plan to end their life. In continuing to trial different treatments and drugs in an attempt to better manage my facial nerve pain, I’ve recently begun a high dose, long course of Prednisone, along with another drug on board and a third as a potential abortive of one set of symptoms. I’ve been on a moderate dose of Prednisone more days than not for the past 2 years, but this is much higher dosing with a step down plan over 30 days. The 20 mg daily has already had an impact on my body over time, affecting sleep, mood, and weight. There is something of a redistribution of fat or fluids in my face and belly. I don’t look like myself to me, even though my overall weight gain has been about 10 pounds in the past year. So it was with concern about the effects of increased dosing that my therapist commented to me on the challenges of managing appetite on Prednisone. He expressed concern and dislike that I would possibly have to deal with regaining control of my weight, which is already a challenge, once I finish this course of medication.
It’s really something how you can’t know when a moment is going to be so perfect as to open your mind and heart and let some fresh air in.
In the last 2, 3 years I’ve given up on myself in all kinds of ways. As I found myself deeper in depression with the constant, severe pain and vestibular issues and the fear that none of it would ever be alleviated, I also decided that it didn’t matter what I did or didn’t do anymore. If I couldn’t be comforted any other way, I would use the one tool that has seemingly served me throughout my life. Food. I have long been of two minds about what foods I put in my body. On the one hand, I’m this person who likes to eat organic food as much as possible, thinks about the welfare of the animals I eat, contemplates how food choices impact the environment. On the other, I eat Devil Dogs. French fries. Bowls of pasta and butter. OK so pasta isn’t bad for you in moderation, but here I speak of the comfort foods. The ones that don’t require my mouth—and face—to work too hard, that appeal to my taste buds, that fill my belly and calm my heart when I am over the top stressed. You may be thinking: many do that sometimes! Here’s the thing: in the giving up, though I didn’t get the gun, stockpile the pills, or drive to the high bridge to jump, I gave up on me by over and over again making unhealthy and uncaring choices about what I put in my body, with no regard to its impact. I no longer cared. What difference did it make, since I’m not going to be here long anyway if I can’t get a handle on things?
How different is this from the kind of suicidal ideation that gets everyone frightened, that prompts judgment and even anger in those who don’t want their loved ones to kill themselves? To be sure, the more extreme choices have the disadvantage of being quicker to kill. I can probably eat my junk foods en masse on a daily basis for quite some time before it creates the kind of conditions that lead to a downward slide towards extreme poor health and death. I suspect that it’s because of this, we don’t spend enough time talking about the slow, quiet dying when we talk about suicide. I recognized at this medical crossroads that it’s all the same in me. The thoughts of suicide, while I am not actively seeking to kill myself at this time, are still there as long as I care for myself in a manner that says nothing matters anymore. If I am going to work as hard as I have been to try to find solutions, to feel better enough to want to live the next 20, 30 years, wouldn’t it be good to be in the best health possible so I can enjoy those years I’m working so hard to experience? Tell the truth, Deb. There is no point in working this hard if I am not also doing the best I can to love myself. That includes cultivating a renewed mindfulness about how I look after myself. Part of the struggle with mindfulness is that I actively seek distraction from the relentless pain. I’ve practiced mindfulness meditation on and off over the years and I wonder if the reason I kept stopping was not only the psychic discomfort that can come with deep attention, but how it would make me acutely aware of my body, and my body has not felt well for a long time. Who wants to sit with that? Nevertheless, as I come to this fresh perspective, with the stars somehow aligning just perfectly for this moment, I am doing the work. I feel good about taking these steps. They also scare me. I’m doing it anyway.
If you would like to contact Deb personally, please find her on Facebook (Deborah Marcus) or at her website: https://visionsofsong.com
L. Denise Portis, Ph.D.
One thought on “Chronic Pain (Part FIVE) : What Does Giving Up Look Like?”
I love your honesty, Deb. Truly it is why your life’s journey resonates with so many. We have all been where you are. Passively or aggressively giving up…
I know for me personally, taking one day at a time is so very necessary. When I look at long-term I get discouraged and think, “How can I EVEN continue this way indefinitely?” Taking one day at a time allows me success one day at a time. I’m in a different place right now; feeling rather healthy mental health-wise if not DROP DEAD TIRED with the normal kind of fatigue living with disAbility requires. However, again the reason your story twangs the heartstrings of so many is because we have ALL been there.
Know you are loved. Know you are prayed for as well. Know that you continue to matter to so many.