Promises That Can Never Be Given or Kept
“Promise me, you will get better, and this won’t happen again.”
God, I heard that phrase or variations of it so many times when I was in the hospital, when I got out, and over the years, and each time I did I would say, I can’t promise you that, it would be a lie, but I can promise I will do my best to get and stay better.
So I am going to share news that I haven’t shared with everyone, that only a few knew until recently, and why I always said I couldn’t make that promise…my depression despite my best efforts, despite my care team’s best efforts worsened in the fall of 2021 and it hasn’t gotten better.
I know that news may be a shock to some, and a struggle to understand, especially if you have seen me over that period. Odds are, I geared myself up for our time together, and we as a society have a hard time understanding how someone could be what we deem “functional” and have depression that is life threatening and/or results in significant impairments in quality of life. The reality is for those of us that fall into that “functional” category we struggle to function, we just don’t openly show it, and often as soon as the work day is over or that door closes, we just sit or sleep or struggle with how to do all these things but we just can’t.
And so regardless of what you have seen, and unbeknownst to most of you, late last year, like a candle flame, my ideation started to flicker, and along with it the severity of my depression started to gobble away at my life again. Things that were easy a few months or even weeks before became tasks that felt insurmountable. I had a good break over the holidays and was hopeful that the rest would help my brain get a bit better, but that didn’t happen. Instead, as January and February, came and went, my ideation continued to flicker and my depression just kept sliding closer and closer to the severe category. Or as a good friend said, I was supposed to be getting more kosher (less HAM) not less kosher (Yes, this is a really bad dad mental health joke but you got to find the laughs somehow). My care team and I had to sit down and discuss, was this a flare, or was this my disease becoming further resistant to treatment? The hope was it was a flare, but after the past 6 months, it seems more realistically it’s probably the latter and I am failing my last available regimen.
That realization, it left me feeling..helpless. As someone who is action oriented and likes a plan, suddenly there is no plan, and a lot of days it’s hard to not be consumed by that feeling, helpless.
In mental health, it’s not often we talk about that grey area in depression, where you are neither alive and better nor dead. We seem to always focus on take the medicine, do the work and you will get better or the tragedy of when someone is lost to mental illness. (PS an honest special kudos to the Judd sisters for using non-stigmatizing language when talking about their own mom’s death). Yes, yes, of course the field acknowledges that there are greys, a spectrum to mental illness, but it’s not really discussed in any meaningful manner publicly as we often see with cardiovascular disease, diabetes or numerous autoimmune diseases, which often leads the person with a mental illness feeling isolated and stigmatized.
To me, I am reminded of the patients I know with stage IV cancer — each knows where that leads and that a cure is not feasible but that under the right circumstances, they may have many good years with their loved ones. I am not sure if I gravitate towards that comparison because its fair, or one I am familiar, and therefore, comfortable with…
Still, it’s hard to not feel as if I have a broken brain, or just feel broken a lot of days, to sit in despair (and pity)…and yes some of that is the disease, but the other part is facing the reality in front of me. Because while for now, my care team has stabilized my depression by increasing the number of ketamine infusions I receive per month and supplementing it with nasal ketamine that’s all its done, stabilize me. And yes, something is better than nothing, but it all feels very temporary. Like, how much time do I have until this fails too? Of course, no one can tell me that. I am in no man’s land, so I try to focus on each day, plan and look to the future…
Still, as I look at that future, I am filled with a crushing sense of helplessness a lot of — most — days. I have very limited choices, TMS and possibly a few clinical trials, as I have decided to not pursue ECT.
Yes, I said, I will not pursue ECT.
I am sure I will hear from some folks, but if it helps you, will keep you alive, why wouldn’t you do ECT? Yes, ECT may reduce my depression but it will come at the cost, a high cost, for me, for my ability to work and function, impairment of short-term memory — so will I really be living or will I just be a live?
It’s a question many with cancer and other chronic conditions face daily. My years working in oncology have shown me and helped me to truly understand how important quality of life is when it comes to living our lives. If a drug or treatment comes with significant toxicity or side effects that a person can no longer be themselves, is the improvement in survival worth it? My observation in oncology has been, it depends. Each patient has a different view, and consequently, a different path to take, and this is mine.
And I want to state this unequivocally, this fork in my care is not one I make lightly. I do fully understand the potential consequences of what could happen if I have another catastrophic mental health event. Been there, lived it, barely. Maybe that makes it easier for me to say it’s the right decision for me right now, and who knows down the line I may change my mind. I just know that is not where I am today. I only want to live, if I can be me.
I know me saying that that is a hard pill to swallow, because in essence I am not saying the quiet part out loud, that this means, unless new treatments become available, in the not too distant future I may not be here (but as COVID and recent events have shown, tomorrow is never promised regardless).
All of this is not to say I am giving up on keeping my disease stable and/or getting better, I feel helpless, but I am not yet hopeless. There are things and people in my life I love and I want to be around for, so I will do my best to keep doing all the right things: manage my asthma, stick to a routine, exercise, take my antidepressant regimen, have firm boundaries, and continue to go to therapy to focus on behavioral skills that will help me cope. I will hope as I keep doing my best at putting one foot in front of the other and trying to find good moments and good days, that when I get to TMS, it works, and that those within psychiatry will find another avenue of care for folks like me — and that the government will find ways to let them since the best hope for individuals like me may be psychedelics.
And look, in certain aspects of my care, I am doing SO MUCH BETTER in not being the kettle than I did before I ended up in the hospital in December of 2019. When my disease progressed last fall, I told multiple people, not just a couple, so that I had quorum who could and would check in on me, especially if I got “too quiet”. I continue to focus on not using work or exercise as maladaptive coping mechanisms, but using them to help me with a routine, and give my body some of the endorphins it needs, all the while being cognizant of how letting those boundaries fall could lead my disease to progress quickly in severity.
A side note to all my clinician friends here: Please never tell your patient that they are your most severe case unless it validates their feelings, otherwise it just contributes to that overwhelming sense of helplessness and hopelessness.
This is where I am today. I apologize if my words shocked or scared you. I needed the time to deal with the changes in my health status by myself before I felt comfortable sharing this with everyone and the world.
And in a way, perhaps it’s fitting that I finish writing this on memorial weekend, as we remember and honor all those that served, like Jei, many of whom lived (and died) with the mental health consequences of service and war. Too many of them seemed functional, “of their right mind” to folks until the end, when they were so far from it. Maybe if we provided them space, if we provide all of those with mental health challenges, to exist not confined to a box or descriptors that doesn’t fit them, we can help all take a step they need to make it through another day…and feel little less helpless and hopeless.