At my last posting, I reflected on stigma and shame regarding mental health challenges, as well as making the decision to pursue disability benefits, and how it creates unnecessary barriers to self and other-acceptance and to reaching out for the help that could potentially improve quality of life for myself and others. You can read that and the earlier postings on this thread here: Part 1 Part 2 Part 3
Having submitted to all exams required of me by Social Security for disability determination, I was awaiting word at the end of October. The first week of November I received the letter stating the denial of my initial application. Although the language they used was such that my advocate felt was the “best” possible denial, i.e. they recognize that my condition is severe but question whether it will last longer than 12 months, it was entirely heartbreaking. How could they not see that the trigeminal neuralgia, as well as major depression and PTSD are not things that will simply “poof!” go away any time soon? It was also incredibly scary but I know that the next steps are likely to drag on for months, if not years. How will I survive? Will I even want to if they can’t help me feel somewhat better? I spent several days in a struggle with myself. Then, a couple of important events occurred. A dear friend and sister in soul offered to help set up a Go Fund Me page for my basic needs, as well as for care that I might be needing in the near future for possible specialty care at the Mayo Clinic. My neurosurgeon felt that my case is so complex that he wanted me to travel for a consultation with a neurosurgeon who has had some good results with deep brain stimulation for pain. It has been nothing short of a miracle that friends and loved ones have contributed to this fund, and it continues to grow towards its goal. I have recently traveled to the Mayo clinic for the consult, which was edifying yet extremely disappointing. It has become clear that the constellation of pain symptoms I experience in the face and head are not the symptoms that they are currently focusing on as they pursue FDA approval for this technique for chronic, intractable pain. The specialist did state that it’s not off the table for me, but it’s not the first thing he would do, though the options that we may try are not terribly promising. Basically, he was compassionate but clear: I have lived with this a long time, and it is complex and not going to respond to a clear cut plan of action. As I made the long drive back to home, I may have screamed long and loud on several occasions, with the windows down of course, no need to get myself arrested on top of everything else, right?
Soon after I received my disability denial letter, I made the decision to resume counseling. I’d been avoiding it, not because I didn’t want to do the work, I was afraid of those hours and times when talking would be too challenging. I realized that it’s OK to sometimes not be able to do much work in a session, I needed (and continue to benefit from) the good match I have with the counselor I am working with at this time. Frankly, he is why I have taken suicide off the table for the moment. I simply will not do myself harm, to try to kill myself, right now. I’m “all in”. I realize that I’ve managed to hang in this long, that I owe it to myself to keep on, and simply not let that be an option for the time being. It’s not entirely off the table, it’s still available at some later date, but for now, I’m going to just take it an hour at a time—taking it a day at a time seems to large at the moment, and I realize that this is all right, too. I received an email from a longtime friend today—we’ve known each other for over 30 years, and she has a history of attempting suicide in her 30s and 40s, and is very much alive and keeping on at 61 years of age. She said she knows that others don’t get factored in when suicide is on the table, as much as others around the person who is suicidal want to think they are, but that she will be absolutely heartbroken if I kill myself. She said this in the context of a recent suicide of a dear friend of her husband’s. I’m usually not able to address this “otherness” around suicide, but she knows of what she speaks and so I will spend some time with it. But I have to say, I am scared and I am not feeling tremendously hopeful, only that I know that we haven’t run out of options yet. Meanwhile, every time I get to be there for a friend, or get to just spend time talking or walking with a friend, these are all the truest blessings.
Thank you for staying with me on this journey. Your interest, your reflections, thoughts, prayers, and good vibes are invaluable.
— Deborah Marcus, guest writer at Hearing Elmo
Hearing Elmo 