Chronic Pain – Part 4 (Links to Parts 1-3 below)

Early Winter trees 2018 by Deb Marcus

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


8 thoughts on “Chronic Pain – Part 4 (Links to Parts 1-3 below)

  1. Hugs! Deb Truly love your honesty with your emotions and glad you are reaching out to your counselor. Really wish we didn’t live so far away. I’m available to listen should you want to talk or just vent. PM me on messenger. Love you Deb!

    1. This really means a lot, Kristin! Thank you! Would love to PM chat sometime soon. We both have catching up!

  2. Deb, you know my history. Suicide is …well terminal. There are no other options or reversal of the decision after one succeeds at suicide. If I’d didn’t survive the days in a suicide induced coma, there would have been no Gary and a wonderful marriage. I would never have experienced the miracle of the Cochlear Implant and all the lives I have been able to touch as a result and all of the friendships the evolved from it. There would be no Margo, no “you”, no Denise, no Rusty, no …. There would be no soul singing to music that had seemed lost forever. No experience of the freedom from isolation and stress of being deaf in the hearing world. There would have been no photography and all the joy that it has brought me and others as that came after… All of the wonderful experiences of my 40s, 50s, 60s and now my 70th decade would never have happened. My friends and family (as you say are not figured into the equation when thinking of suicide) would be left as survivors…and survivor guilt that never ceases, similar to your pain that you feel for your father and the deaths of close friends…but worse. I know because I have experienced both. Putting suicide on the table, or even holding it just off the table to be revisited later, is a decision in favor of giving up. Yes you are in pain, both physical and emotional, and very intense at that. I have had personal experience with some of what you are experiencing, and some experience with things you haven’t experienced that are very intense for me. It is the state of all living things in this world. Its tough, extremely tough, but while you live there is hope. Suicide is the ultimate destroyer of hope. Someday, hopefully sooner than later, there will be a solution for you. Don’t give up and miss all that life has to offer, and all that you have to offer for life of others. Don’t leave your friends, many of who are reaching out to you, with survivors guilt for the rest of their lives, for their very special friend, you!!

    1. Thank you for your heart felt reply, and sharing openly some of your experiences and thoughts about suicide. It means a lot that you want me to stick around. I too hope I never give up. This will never, however, be based on the matter of “survivor guilt”, but more based on the pros and cons of living life in my skin. I work towards crafting a life of meaning and purpose no matter what my circumstances. You’ve experienced a lot of pain and struggle, and you have a gratitude for having survived your own desire to die, when you were deeply depressed. I am grateful that you are still here, too!

  3. Deborah – I am so sorry you are experiencing this profound pain. It saddens me that there can’t be more done to help you at this time. You will be in my thoughts. Just know that your story has deeply impacted me. Although I do not live with chronic pain, I am dealing with the pain of having just lost my dad, who was my world. Blessings to you.

  4. Shanna, my heart goes out to you on the recent loss of your dad. It changes things, it really does. There are parallels here, too, the fact of needing to re-think, so to speak, your place in the world, when you lose someone or something so profound. I thank you so much for your kindness and feedback.

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