Anger, Resentment, and Grief OH My!!

I was listening to a conversation that Christina Applegate was having with Dax Shepard on his Pod Cast Armchair Experts. I have always been a fan of Christina Applegate, and I’ve admired her talent and beauty for a very long time. This accomplished actor literally grew up in the business, began as a baby. I remember feeling for her when she had Breast Cancer twice and vividly recall how articulate she was in advocating for Mammograms and the Cause , in fact, it made me admire and love her even more. I always felt that she was the picture of grace, as so many of us do made obvious by the audience reaction when she recently appeared as a presenter on the Emmy awards. The outpouring of love for this beautiful woman was plain to see as she stood at the podium, cane in hands and brought to tears as the audience of her peers gave her a rousing standing ovation. Truly a beloved actor who many people my age have come to admire and know from her body of work…after all she spent a great deal of time in our living rooms, and many of us have either watched her grow up, or we have grown up with her.

As she spoke, I heard an echo of how I spoke when I was traumatized by my MS diagnosis almost 30 years ago. When I was diagnosed there was one disease modifying therapy available, Betaseron, interferon beta-1 b, and it was terrifying because there was very little conventional medicine could do to help manage this incurable, chronic, progressive disease. I recognized myself when Christina spoke and I was reminded of how the trauma of my diagnosis caused profound suffering that lasted for many years. I could hear her struggling with the mind f--k characteristic of this diagnosis, I know it was for me. Christina said that this is the worst thing that has happened to her in her life, and personally I would have difficultly making any argument to the contrary. I appreciate that she is sharing her experience, as we all have a story to tell and the act of telling your story, giving voice to your own reality and expressing feelings is therapeutic. You can easily go down the rabbit hole when you are first diagnosed with this disease that is a chronic, progressive, disease that has no cure and no known cause. I fell down that Rabbit hole and it took me quite a lot of suffering and a very long time to climb out. I heard so much anger and resentment in Applegate’s voice, it was palpable, she actually stated “I’m angry, this sucks!!! Her quick wit and ability to make jokes brakes the tension as the conversation continues and her angst seeps into the room where she is being interviewed, I think it was her living room. I understand full well and relate to this profound degree of anger and resentment that often bubbles up when we hear that we have MS, it did for me. Something happens to us when we learn that this disease has taken up residence in our central nervous systems and basically turns our worlds upside down. Anger and resentment were the first emotions that impacted me when I was diagnosed and simultaneously traumatized. In my studies and work, I learned that the anger and resentment were manifestations of the Grief that consumed me! Seething repressed anger and ever growing resentments were how I began to grieve myself , the life that I imagined, and all of my dreams that were shattered when I heard two words…. Multiple Sclerosis.

Applegate discussed her breast Cancer experiences, saying that she did some good raising awareness, starting her Foundation, raising money and for speaking about the Cause. Christina was positive, inspirational, public person turned activist, who twice survived Breast Cancer. Christina explained that she was not honest when she spoke of her experiences with cancer, that she would put on a brave face, project a positive attitude but that her actions belied her overwhelming private suffering. I’m not quite sure if she felt that she did a disservice to those dealing with breast cancer by not telling her truth, or to herself by projecting a positive outcome and not acknowledging or articulating in the public arena how she really felt. I found it interesting that she also discussed an incident with a friend who was also a public figure who when diagnosed with breast cancer took to Social Media professing something to the effect that, she was going to fight her Breast Cancer and she was going to beat it!!” Applegate explained that she urged her friend to take that message off of her social media, asserting, and I’m paraphrasing, “There is a daughter who will read your post whose mother put up her best fight, but she died today.” What an intuitive empathetic mindset she had and when discussing it in retrospect she affirmed that her advice to her friend probably spared many others dealing with Breast Cancer some hurt. Comments like that can have a profound impact on others in similar circumstances. I personally hate when the words like; fight or battle are mixed into discussions regarding how I am managing my MS. I understand the metaphor completely, but in my personal experience, the energy it takes to “fight” my MS only serves to then hinder my ability to manage and live with my MS. Additionally, I believe that our reactions to our diagnosis impact how the disease manifests or at least our perception of whatever shows up. We all know that stress and MS do not play well together and that this diagnosis is most definitely stressful to say the least. From the moment I was diagnosed and for a very very long time, I catastrophized every MS scenario imaginable, and in an effort to stay in denial about my diagnosis, I would never attribute any physical symptom or mind symptom to my Multiple Sclerosis, nor would my physicians.

It has been nearly thirty years since my diagnosis, and there have been remarkable developments in understanding and managing this disease. There is much to be grateful for, as best practices protocols are being developed and we are cultivating an arsenal of disease modifying therapies that help keep our disease progression at bay. We have connected our overall health and well being with our Microbiome, we understand more about the many invisible forces that impact MS, how food can be medicine, how Yoga is beneficial, how mind health issues often accompany our diagnosis….I could go on. We are beginning to appreciate how our lifestyles impact our overall health, and recently we have recognized that the incidences of MS world wide have been grossly underestimated prompting many MS Organizations to adjust the numbers of diagnosed cases, in fact they basically doubled. It is my opinion that despite significant adjustments made to the incidence of MS Nationwide and across the World, I believe that the numbers are still off, and in regard to MS we are only seeing the tip of the iceberg, Everyone knows at least one person with MS, and that person who has MS is likely to have a relative who has MS. Scientist across the globe are focusing on MS, and research Nationally and Internationally is ongoing, best of all the Internet provides a space to instantly share information, grow networks and foster collaboration among scientist! Development of improved disease modifying therapies is ongoing, Stem Cells therapies are being examined as are a myriad of other investigatory therapies. The revelation that Neuro Plasticity, our nervous systems ability to change its response to stimuli by reorganizing its structure, functions or connections after injuries is something that calls for the full attention of the MS Community.

I’ve worked very hard to let go of the Anger, Resentment and Grief that MS brought into my life because I needed to release myself from tyranny the negative energy that these feelings filled me with. I was short tempered, had difficulty regulating my moods that vacillated between depressed, anxious, obsessed and angry. I was not thinking straight or processing information correctly, and my ability to focus was shot. I was fortunate to have three small children and three reasons to get out of bed every day…but I suffered horribly and as a result, they suffered horribly. I was not right, I was very sick and not functioning as the best version of myself, no…not even close. The constant anger, resentment, sadness and anxiety caused physical pain that is so difficult to explain in words, suffice it to say “depression hurts!”, it really does! The anxiety I lived with caused a feeling of fight of flight, but you are just basically in limbo, can’t fight and can’t fly, and the resentment took up residence in my body by upsetting my stomach, causing TMJ, a bitter taste in my mouth and too many sleepless nights to count. The grief was unbearable and it was the engine that drove all my other mood issues. I was suffering with Complicated Grief, grieving myself, my hopes, my dreams,my excitement for the future, all matters that my diagnosis took from me. Buddha teaches us that holding onto anger is like grasping a hot coal with the intention of throwing it at someone you are angry with, still you are the one who gets burned holding onto the coal. The anger and resentment festered inside of me and it took energy from me that I needed and certainly did not have to spare. It is exhausting being resentful, angry and it is corrosive, it beats you down. I needed to embrace radical forgiveness, in that I needed to forgive myself for every cruel, self-loathing thought I had about myself and for the shame that I assigned to myself because of my diagnosis. I had to forgive myself, not excuse myself for behaviors that were unbecoming of the person I knew myself to be. Learning that you have MS, and the immediate period of time following your diagnosis is a very precarious period for us. Neurologists and Healthcare professionals who diagnose MS need to understand and address the psychological blow that this disease delivers, as it is not only an assault on your mortality, it is an assault on your identity! I understand the urgency to begin disease modifying therapies, still I assert that attention to the patients state of mind should come first. A diagnosis of Multiple Sclerosis can cause an existential crisis, it did for me, furthermore it set me stumbling down a very difficult path where all I found was intense prolonged suffering. I believe that we need to have hope and look optimistically at out lives because really, who know what tomorrow will bring. Maintaining a clear mind is my best assent in terms of managing my disease and clarity of mind has strengthening my ability to process and digest all of the information inherent in learning about this esoteric, peculiar disease. It took me quite a while post diagnosis to get hold of the reins of my metal health wellness, I only wish I had some guidance sooner or that at the very least someone recognized how much I was struggling.

I do not want to sound like a Pollyanna, and please don’t assume that I haven’t suffered enough, trust that I have. In no way am I judging Christina Applegate, we all have our own MS, no two cases are exactly the same. I know that this disease can be a ugly persistent beast, and I have never considered my diagnosis a gift that taught me some lesson in life I needed to learn. MS is a difficult diagnosis that I have lived with for my entire life, born into a family with an Aunt and first cousin who had MS and me. I am certain from the debt of my soul, that the trauma of this diagnosis needs to be appreciated, addressed and managed from the get go. How we respond to any given situation or circumstance governs the impact that situation or circumstance will have on us, physically and emotionally. Had attention been paid to my mind health, had someone observed or asked a questions, they would have known that the trauma and grief I was internalizing caused unspeakable pain and suffering and had me residing in a very dark and dangerous place. I have learned how to handle my grief in a manner that serves me, strengthens me and makes me maintain an optimistic disposition and clear mind. I have learned that grief is a very individualized process, and that Grief as a result of Trauma can cripple you as it is all consuming and complex. When I find myself mired in anger, resentment, sadness or grief, I work to restore a sense of calm so that I am able to maintain agency over my actions and reactions. This work to restore calm involves expressing compassion for myself, and acknowledging that I need to hold myself with loving kindness. The most enlightening aspect of showing myself compassion is that when I do, I encounter the Grace I need to move forward, unhindered by the negatives that can easily bring me down and keep me down. As a person who has lived with MS my entire adult life, from Marriage, Motherhood and Menopause, I have experienced seasons of life and am convinced that Mindfulness and Meditation have enriched my life and have helped me maintain clarity of though and calmness of mind. My daily Meditation and Gratitude Practices help me access the present moment, and when we are able to dwell in the present moment, all is well…. it is like magic and medicine. I’ve learned to integrate grief into my life, and I acknowledge that this unique Grief has been part of my DNA since my diagnosis in early 1996. Rather than suppress my Grief, I try to embrace it, incorporate it and use it to my advantage. I have learned so much about myself through the lens of Grief. I learned about my priorities and what is important to me, how precious and fragile life is, and how in a real sense suffering has been enlightening. Applegate admits that she just is not there yet, she has not come to a place of acceptance or let go of her anger & resentment. She assures Shepard that she will get there, just not no do you thinkw. We all need to go through our own process, still I wish I could help ease her suffering and invite her to tap into some self care she can employ to ease help her distress, quell her anger and resentment brought into her life when she heard Multiple Sclerosis. It is difficult to wrap your brain around and find any sense of comfort once diagnosed because there still are so many unknowns related to MS, and the two known facts etched in stone about MS are: There is no cure and Not sure of what causes MS. It is difficult to manage MS to be sure, still, from the get go the psychological impact this disease and the trauma that it can cause must be appreciated and addressed. I believe that healthcare professionals need to address the serious and complex Mental Health issues inherent in learning that you have Multiple Sclerosis.

As always, just my thoughts….wonder about yours.

With lots of love,

Stephanie