I am relieved for a few reasons. Of course, it's lovely to have complete hearing. I will never take that for granted again. But also, I am relieved that I am done with the rather intense triple meds regime for a week. They helped, but they caused a lot of other problems for me. I am still reeling from some of these. Steroids and I have a history already with the Crohn's and I had just weaned off a few months of prednisone. I knew I had no choice as I was put on 40 mgs for 3 days, then 30 mgs for 3 days, and then 20 mgs for 2 days and then zero by the ENT doctor. Soon I could feel my bones hurting, I could feel myself becoming very agitated, I was absolutely ravenous, and bloated and my heart raced, and I found it hard to sleep. The day I had zero steroids I completely fell apart. I couldn't stop crying. I cried for hours. I was upset. Possibly even beyond upset. I hated my life, I wished it was over. I had fought bitterly with my noisy, loud, saxophone playing husband a few days before and I plunged into a state beyond despair.
I struggled to tell myself that I wasn't myself. I was on very powerful meds that altered many of the ways I felt and that must have had an effect on how I dealt with the world. Surely I wasn't some kind of Jekyll and Hyde or some bipolar beast who could fall apart so spectacularly and then appear so sane so soon after. But that's what began to happen to me on these meds. In addition to steroids I was on Klacid and Acyclovir, all in order to quieten nerve inflammation and restore hearing. I was desperate to do what I could to help myself, so I followed the doctor's orders. I took my meds as best as I could, even having the Acyclovir 5 times a day, as late as 1am in the morning. I did what I could, but at the same time I was slipping away into something horrible and terrible.
I got upset about noise, especially loud saxophone playing and I argued, and because I was unwell I felt I was right to want some peace and quiet, and to have my feelings understood. Because I stood on the edge of the precipice of possible deafness I deserved to be listened to and to be given space and time to heal and I felt entitled to that because I was the one who had sustained nerve damage. Not you. Me. Me. Me.
I put myself first. And as I did that I slid so far down that slippery slope that I might have drowned in the quicksand and quagmire of despair that grabbed my ankles and refused to let me go... except that I spoke to a friend, and finally let everything come out. It all came flooding out of my soul. Not only was it cathartic, it was also very necessary so I could make amends, break free from old patterns of behaviour and learn to cope again with illness both chronic and acute, hate myself so much less and love myself all the more and at the same time seek to love others more purely. What a tall order! But life is full of these moments when light shines in on our darkness, and we see what we really are, and we know we have reached a place where action is needed and if we do not act we miss a key place and point in our lives. I am so glad I let the light in. It was painful, but necessary, as many pains are in life.
No one else can walk my path, no matter how hard they try. No one else can enter into my heart and mind and know what I feel. The Divine can, but I speak of those made in His image, and yet very much nothing like Him. Mere mortal beings. My husband cannot fully comprehend, neither can my children. They can try to empathise and sympathise, if at all, but beyond that there is nothing more. I cannot expect them to understand, they just do not have the capacity. While that is heartbreaking, it also shifts the responsibility of managing a chronic illness well almost entirely onto my shoulders.
I struggled to tell myself that I wasn't myself. I was on very powerful meds that altered many of the ways I felt and that must have had an effect on how I dealt with the world. Surely I wasn't some kind of Jekyll and Hyde or some bipolar beast who could fall apart so spectacularly and then appear so sane so soon after. But that's what began to happen to me on these meds. In addition to steroids I was on Klacid and Acyclovir, all in order to quieten nerve inflammation and restore hearing. I was desperate to do what I could to help myself, so I followed the doctor's orders. I took my meds as best as I could, even having the Acyclovir 5 times a day, as late as 1am in the morning. I did what I could, but at the same time I was slipping away into something horrible and terrible.
I got upset about noise, especially loud saxophone playing and I argued, and because I was unwell I felt I was right to want some peace and quiet, and to have my feelings understood. Because I stood on the edge of the precipice of possible deafness I deserved to be listened to and to be given space and time to heal and I felt entitled to that because I was the one who had sustained nerve damage. Not you. Me. Me. Me.
I put myself first. And as I did that I slid so far down that slippery slope that I might have drowned in the quicksand and quagmire of despair that grabbed my ankles and refused to let me go... except that I spoke to a friend, and finally let everything come out. It all came flooding out of my soul. Not only was it cathartic, it was also very necessary so I could make amends, break free from old patterns of behaviour and learn to cope again with illness both chronic and acute, hate myself so much less and love myself all the more and at the same time seek to love others more purely. What a tall order! But life is full of these moments when light shines in on our darkness, and we see what we really are, and we know we have reached a place where action is needed and if we do not act we miss a key place and point in our lives. I am so glad I let the light in. It was painful, but necessary, as many pains are in life.
No one else can walk my path, no matter how hard they try. No one else can enter into my heart and mind and know what I feel. The Divine can, but I speak of those made in His image, and yet very much nothing like Him. Mere mortal beings. My husband cannot fully comprehend, neither can my children. They can try to empathise and sympathise, if at all, but beyond that there is nothing more. I cannot expect them to understand, they just do not have the capacity. While that is heartbreaking, it also shifts the responsibility of managing a chronic illness well almost entirely onto my shoulders.
I must live with this knowledge that I journey alone in the innermost deepest recesses of my heart. I must not be afraid. I must not feel unloved. I must not give up. All of us journey alone. Somewhere along the way we meet those who comprehend, and we move along, and meet others again, and move along as the tides of time push us on our way. That's okay. That's life. That's sufficient for my soul. I will not and must no longer expect those nearest and dearest to me to know what I need, to give me what I perceive to be my right... therein lies the death knell of love. I cannot and will not let love die in my heart.
My soul was laid bare in a dark hour, and it showed me how little I really know of my own self. I will learn. I will change. I will enlarge my heart and life and I will abdicate the throne of my heart. Not I, God, but Thee reign. Teach me to love, for love's sake, not mine.
Today I know my hearing is restored. I also know my soul is healed. It’s an ongoing process, one that requires that I revisit these key moments and lessons, even if I feel it is unfair, or burdensome to a chronically ill person. There is hope.
Thanks for reading,
Pav
My soul was laid bare in a dark hour, and it showed me how little I really know of my own self. I will learn. I will change. I will enlarge my heart and life and I will abdicate the throne of my heart. Not I, God, but Thee reign. Teach me to love, for love's sake, not mine.
Today I know my hearing is restored. I also know my soul is healed. It’s an ongoing process, one that requires that I revisit these key moments and lessons, even if I feel it is unfair, or burdensome to a chronically ill person. There is hope.
Thanks for reading,
Pav
Ps. Almost a year after this, in May 2013, I broke my left ankle, and was in a wheelchair, unable to walk post surgery. My marriage ended after an argument about a cup of tea which I needed help getting. I think this post reflects one person’s attempt to bridge a gap with very little reciprocity from the other. “Mea culpa” was me acknowledging my struggles, and my trying to make things work. There was never an acknowledgement of difficulties or a conversation in which we spoke openly of our struggles. I was anxious, the other avoidant. And so love died in one heart while mine tried to keep it alive, until eventually, it found no need to any longer. Those who do not understand cannot empathise and they barely sympathise. I should have known better than to ask anything of them. If I cannot walk to make my own cup of tea, I’m happy to go without. :)
