InkTober: Day 24 – One Dozen

One of the hardest things to cope with in life is knowing that you’re not being heard. Knowing that your voice is drowned out because others believe they know what you feel better than you do. Whether it’s your emotions or how you physically feel in your body, it’s a difficult thing to accept when your feelings are dismissed or ignored. It can also greatly affect the way you interact with others and how you feel when you walk away.

I was in the hospital for almost one dozen days three years ago – 11 days to be exact –, while doctors and nurses streamed in and out of my room around the clock monitoring my condition. They adjusted the tubes in my arms that led to multiple IV bags and changed those bags countless times when the medications they contained had emptied after flowing into my body one drip at a time. They scheduled tests and procedures for me to undergo, for which orderlies punctually arrived and wheeled me to, through mazes of sanitized hallways. The only thing they didn’t do was listen to me.

Even as I lay in the hospital bed writhing in unbearable pain, they refused to hear or believe me. For close to a dozen days, they did not listen to me when I described the intense pain in my lower abdomen. They did not listen because according to them, the condition they incorrectly diagnosed was never accompanied by such high levels of pain. They gave me the lowest doses of pain medications to appease me and take the edge off my ‘imagined’ pain and continued to flood my body with other medications without doing the proper probing or listening to arrive at a correct diagnosis.

That experience of not being listened to continued, for almost a year. It wasn’t until I was seen by an Anesthesiologist completing her Fellowship in Pain Management, almost 11 months later – at the pain clinic where I am now treated – that someone finally spent the time asking me a lengthy list of questions and listening closely to my responses, that I was believed. The compassion and patience she extended to me during our first meeting, and during each meeting that followed until the end of her Fellowship, made me feel huge relief; and the first report she wrote and sent to my other doctors led to a monumental shift in their attitudes about my illness and my treatment plan.

Had I not met that doctor, I’m not sure how I would be coping now. Her willingness to listen to me and act on what I told her changed so much about how I perceive my illness and its symptoms. It also helped to temper the negative perception I was developing about the other medical professionals who were involved in my care, and those who still are. I know she was doing her job, but her approach made all the difference, and I hope the patients she continues to work with will have experiences similar to mine.

InkTober - Day 24 - One Dozen

 

Struggling With Acceptance

I’m struggling with acceptance: acceptance of my own circumstances. Currently, I have no control over what my life looks like from day-to-day because my pain is so unpredictable. This past week I suffered through multiple days with feet and legs so swollen they hurt and made it hard to walk. I didn’t get much sleep either, and as I write this, I’m in the midst of a pain flare for which I’ve had to take the highest doses possible of my pain medications for a few days. If I don’t get some relief with this amount of pain medications, I have to go to the emergency room to get help.

What I’ve outlined is only some of what I can’t accept on days like this. Over the last little while, I can’t accept that after more than two years of countless tests, so many invasive procedures, and a rather risky surgery, I have no pain relief. I can’t accept relying on handfuls of pain medications to allow my body to function, while they cloud my thinking. I can’t accept that the only time I don’t feel pain, is when I’m asleep; and the irony that sleep is a state that is so difficult for me to reach because of my pain. Nor can I accept that the sleep I so desperately need sometimes never comes or, when it does come, is interrupted by my pain. This cycle makes me feel like a helpless hamster performing on a spinning wheel for a treat that never comes.

As much as I’m having difficulty accepting my pain, I’m having even more difficulty accepting the compassion and generosity of the people in my life. The people who are trying to help me cope with the pain and all the adjustments I have to make in my life. I know this doesn’t’ make sense, but it’s hard to go from living an independent life with what seemed like endless years of adventurous activity ahead of me to being someone who can barely get out of bed some days. I know I have trouble accepting their compassion and generosity toward me because I’ve always had trouble showering myself with these things. Although, I have no difficulty expressing and abundantly giving these things to others – and I never have, not even now that I’m ill.

I’m starting to question whether this lack of acceptance and being hard on myself, and having expectations that others don’t have of me – not even my doctors – are harming my health. My therapist has an exercise he asks me to do where I am to imagine that I have a close friend or a twin living with my challenges and feeling as I do. I have to give them support and tell them what I think about how hard they are on themselves. The result is always the same: I’m able to see how ridiculous it is that I can feel compassion and empathy for someone else, but unable to feel them toward myself and unable to be gentle when attending to my needs. When we finish this exercise, I promise to work harder at being gentle with myself because I know it’s the right thing and best thing to do for myself. I do try. Really, I do, but it’s hard. It gets harder each day that I don’t know what to expect from my body.

I’m afraid that my struggle with acceptance is doomed to continue as long as my pain continues and will need my attention for a long time to come. Whenever I feel this way, I remember this quote, “If your compassion does not include yourself, it is incomplete.”

If Your Compassion - Buddha

I believe this is true, so I know the right thing to do for myself, to break my struggle with acceptance of my pain and my changed life is to treat myself with more compassion, just as I would with someone I care about.

 

My Friend’s Prayers and Compassion

In the wake of a physically and emotionally painful week I received prayers and compassion today.

Today a long-time friend that I met in my first months of university decades ago called to see how I’m doing. Throughout our friendship we have had healthy debates about the existence of God and the meaning of faith. He has worked particularly hard to influence my beliefs and tries to have me see the world, if even just for a moment, through the lens of a believer in Christ, but I can’t. That ship sailed for me when I was about fifteen and my family and church minister failed to show me how God and Christ could fit into my personal belief system as I grew and started to question the world and my place in it.

As we continue to be part of each other’s lives we are more open to respectfully listening to the other’s point of view, but we know that neither of us will change our beliefs anytime soon. I may not understand it, but I do respect his unyielding faith in God no matter what happens in his life. I still don’t think living your life with the belief that everything is guided – if not already decided – by an omnipotent, omnipresent being is a sound approach, but it works for him. Over the years I’ve explored many religions in search of the same peace that he has. I haven’t had much luck. The only things that come close are practicing mindfulness and meditation, but my practice has little to no discipline.

When my friend called today and I shared the news of the week with him he was very upset for me. His confidence in my reluctant surgeon has plummeted and he believes I should try to get my case transferred to the second opinion surgeon. He can’t see how doing nothing and leaving me to live with this pain and even the slightest chance of developing cancer is the right thing to do. Furthermore, he doesn’t understand how my reluctant surgeon can so easily discard the opinion of the second opinion surgeon that I need to have surgery, or his strategy for the setup of a surgical team ahead of the surgery to cover any issues that could arise; not to mention the surgical pain management plans developed by the pain clinic to diminish the risks of greater pain after surgery. Especially when she doesn’t seem to have a solid plan of her own.

So my friend did the one thing he does understand. He prayed for me. He prayed that I can continue to endure my illness and the pain. He prayed that my doctors will soon find a way to restore my health and end my suffering. He prayed for God and Christ to watch over and protect me. And I was grateful for his prayers. Having him pray for me comforted and calmed me.

I may not share his beliefs but he loves me so much he prays for me often and asks God to grace me with his protection and compassion. I love him for that. And I must have faith and believe that when someone loves you enough to pray for you the goodness of that energy must have a positive effect in your life.

 

Duran Duran – Save A Prayer