I’m reading a book titled, “Finding Inner Courage,” by Mark Nepo. It was given to me as a gift five-and-a-half years ago by a friend while I was in the midst of a particularly difficult relapse.
It was during this relapse where I lost the ability to use both hands, I developed a slight limp, suffered from extreme bouts of dizziness which left me unable to drive, the left side of my face went numb, my mouth went completely numb, I lost some of my sense of taste, and the hearing in my left ear was negatively affected, making it more difficult to hear what others were saying especially with surrounding noise. When the symptoms started to reverse (mostly in the order in which they appeared) I had burned my mouth several times over because I was unable to feel the temperature of the food I ate.
I was out of work for three months, it took my body nearly a year to recover, and mentally I wasn’t right for at least 18 months, terrified by the raw, terrible power MS had over me and my complete powerlessness to the situation. I was adrift, left to the demands of my illness not knowing if or when I might lose another ability and if that ability would ever return.
She mailed me this book during the height of my relapse where I was despondent and terrified wondering what else I would lose. Her note was brief, telling me the author’s writing style reminded her of my own and hoped that his words of hope would help see me through such a dark and difficult time. It was one of the kindest things someone had done for me. And it helped. It really, really helped.
Now I’m in the midst of another potential health crisis. Stuck in the waiting phase as I meet with more doctors and discuss more diagnostic tests. My body it seems is not nearly finished with me and I hope that whatever this is, it is not too serious. That it deals with my uterus only makes me that much more uncomfortable.
Is it just a coincidence that I now am having issues with my uterus when for years I struggled with sex and sexuality? It is a sexual organ is it not? Some outdated belief that it is the height of femininity, our womb? The irony is not lost on me then, that as a childless woman I may need to have a hysterectomy, solidifying a particularly difficult decision: a decision made due to family history of severe mental illness and my own severe physical illness. Between the two, I just couldn’t, in good conscious, risk a child. That I had been on the fence about having children helped, but it still did not nor does it ever fully take away the what ifs, even though in my heart of hearts, I know my husband and I made the right decision.
With the issues I’m currently having, it begs the question if I would have even been able to get pregnant at all. Polps, atypical hyperplasia…. I’m left wondering, with my hormones out of balance causing problems with my endometrium, could that also be the reason for my increased blood pressure and significant struggle to lose weight?
Based on my readings, to develop endometrium hypeplasia, one does not produce enough progesterone and has an overabundance of estrogen. Neither is good. I assume then I’ll need to go on hormonal therapy. That atypical cells were found in my endometrial biopsy means they need to determine the source. Is it inflammation? Or something more serious such as cancer? I’m only 37 but hell, I was 28 when diagnosed with multiple sclerosis so I won’t rule anything out.
I’ve often wondered how to best navigate negative feelings such as fear/anxiety, sadness/depression, anger, hopelessness, and hurt. Not to mention envy and jealousy. I struggle with all of these turbulent seas of emotion, but with none more than fear.
I’ve written about fear several times in the past, but it’s still by far my most difficult and destructive emotion to navigate. Now with another potential health scare, it’s become even more prevalent and I’m desperately trying to keep my mind occupied with pleasant thoughts and busy work to keep me from spiraling into a dark, dank infested den of fear and anger. Once I enter that den it’s hard to exit. Every ache and pain becomes a major unknown illness, I’ve already determined that I will be diagnosed with the worst possible outcome, my mood is irritable, sometimes I want to be touched, others times I want to be left the hell alone, sleep is impacted, breathing is elevated, and the restlessness. Oh God the awful, insufferable restlessness, where I just wish I could somehow get out of my skin, of my mind, out of my body.
But I cannot escape my body nor its demand of me. One particular chapter/essay titled, Loving What You Fear gives me hope that somehow, some day, I will find a way to make peace with my body. I’d even settle for a truce at this point, if that will teach me to better manage fear. I wish I were better equipped rather than in constant turmoil. Every time my phone rings I’m paranoid it’s another doctor calling to give me bad news. Illness and all its complications scare me. How then am I to learn to love illness?
Dear hubby tells me all the time that not everything multiple sclerosis has brought me has been negative. And indeed that’s true. For in addition to the fear, uncertainty, pain, and disability, it has allowed me to develop greater empathy, an awareness of how precious and time-sensitive life truly is, and it has given me the courage to make decisions I might not have made otherwise, case in point, leaving a full-time, lucrative career in corporate America to write fiction and creative non-fiction full time and to foster a growing passion of painting, which I subsequently do part time.
I found courage even while simultaneously terrified. And even while still battling fear. It never goes away. My illness never goes away. My symptoms, tho usually manageable, never go away, nor does the ever present awareness of my fragility my mortality. Those insights never leave me either and I am faced day after day with trying to make sense of my beliefs and what I truly think is my place in the world. What do I want to accomplish while here especially given my health?
Am I scared of dying? Of suffering? Of not living and accomplishing my full potential? Am I scared of what awaits us after death? And of the decisions that I make every day while here? When I try to analyse this fear, I often stop and move on to other distractions, as though my own mind does not wish me to figure this out. As though my own mind, so used to this fear, clings onto it like a savior, when all it does is hurt.
I don’t know, I just don’t know. What is this paradox and how can I cure it? How can I get rid of or more realistically better manage this pestilence so that I do not fear every phone call, or every ache my body produces.
Is the answer really learning to love that which you fear? Or are those simply empty words and false promises?