Tag Archives for chronic illness

Gratitude and Creativity: We Rise By Lifting Others

The wife of my friend R has cancer. It started as colon cancer for which she had surgery to remove the tumour followed by radiation; and her doctors believed they removed all the cancer. Unfortunately, after a follow-up CT scan they found a new cancerous tumour in her liver. They surgically removed that tumour along with a significant piece of her liver and again treated her with radiation. About two months ago, they found another tumour on her liver. She started radiation treatments for the new tumour a few weeks ago, trying to shrink it, but her oncologists now believe she needs another surgery to remove this tumour too. The looming question is whether there is enough of her liver left from the previous surgery to cut any more of it out.

My friend R is losing sleep over this every night, but he’s trying not to let his wife see it. He’s worried about his wife and her prognosis, but can’t let her know how worried he truly is. In their marriage, he is always the level-headed, strong, practical, rational thinking being. He’s the one that gets things done and takes care of everyone. He manages the household finances, figuring out when they can splurge and when belts need tightening; and he works at pulling his introverted wife out of her shell by trying to include her in his various circles of friendship, taking her on trips to far off places, and always putting her first.

Unfortunately, R’s wife has never warmed to me: even though he and I were friends, long before he ever met her. Her excuses for not liking me have ranged from I’m too young – they are about fifteen years older than me; I’m single – my past relationships have never changed her attitude, and I learned that only a marriage will suffice; and I’m too attractive, which as far as I’m concerned is about her lack of self-esteem. R has hosted dinner parties, where his wife has exchanged so few words with me it was obvious is efforts to spark a friendship between us, were for naught. So, our friendship – R’s and mine – exists away from his wife’s lack of fondness for me.

Even though she’s not fond of me, I’m worried about her. I’m worried that the recurrence of her cancer is a bad sign. According to R, one doctor is concerned that during the last surgery – when they removed the first tumour on her liver – they may have taken too much of one lobe of her liver to make sure that the tumour would not regrow. If that’s the case, they may have to rely heavily on radiation to shrink this tumour then follow up with another CT scan to see whether she needs more radiation or if they have to attempt to remove the remaining mass with surgery. For both their sakes, I’m desperately hoping the radiation works.

Recently, R told me that his wife has lost interest in all the hobbies and activities she used to do before she became ill. I’ve decided to send her a gift that I hope will lift her spirits. I know that she loves flowers: she wanted to open a flower shop when she retires from her current career. I can’t give her a flower shop, but I can give her some adult colouring books with drawings of flowers and gardens, and a set of coloured pencils. My hope is that the simple act of colouring will soothe her mind, distract her from thinking about her illness and pain, and, I hope, re-spark her interest in the things she used to love doing – as it has for me.

We Rise By Lifting Others

I can’t count all the ways over the course of our friendship R supported me through a tough time, or said or did something to lift my spirits. I want to support him and his wife in any way I can. I know that what I’m doing isn’t much, but when I told him about my plan, he was happy and grateful; and I hope it helps his wife, even if it’s just to put a smile on her face.

 

Cyndi Lauper – True Colors

 

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 Bathroom Is A Safe Place

A few days ago, my friend R came over and did some work for me in my bathroom. I’ve been in need of a handheld showerhead for a while, so he picked one up for me, along with a few other items to make my bathroom a safer place. In days past, I would have been able to make these changes to my home without anyone’s help. I enjoyed going to the hardware store and searching the isles for the items I needed to do different jobs around my home: paint, brushes, tools, fixtures. Then I would come home and get started on my project, and over the course of a weekend or a few weeks, I would work for every hour I could until I finished. When I did finish – regardless of how good or bad the outcome – it would fill me with pride to know I used my hands to get the job done.

The showerhead R got me is quite nice. Before buying it, he did a bit of research and sent product descriptions for me to review and choose the model I liked best. The one I chose is lightweight and has a six-foot hose, so it’s easy to manage in the shower. The main selling feature was the variety of spray settings. It has eight different spray settings including two different massages and one just for shampoo rinsing. I think I’m most excited about the shampoo rinsing setting than all the others, because I’ve let my hair grow a lot since my illness started so washing my hair is a pain – this showerhead might save me from chopping it off.

The Power Of A Shower
The Power Of A Shower
The Power Of A Shower
The Power Of A Shower
The Power Of A Shower

The other things R got for me are some grab bars. Last winter I fell in the bathtub, and since then I’ve been using a shower chair when I take a shower. Unfortunately, I’m still not one hundred percent steady on my feet. The occupational therapist I saw in the spring had written a recommendation for me to have grab bars installed in my shower to help with my balance and keep me safe while standing on the wet surface of my bathtub. I had hoped that after surgery, I would be strong enough not to need them, but that’s not the case. The grab bars R bought me are amazing. They don’t require any drilling into the bathroom tiles for installation. They have super suction pads that lock on to the surface of the bathroom tiles. The sealed grip is so strong R couldn’t make them budge.

My bathroom is a safe place now. I have a shower chair, an anti-slip mat on the bathtub floor, a handheld showerhead, and, thanks to R, grab bars on the walls to prevent me from taking a fall like the one I did last winter. In a strange way, I feel motivated to get better and stronger so I don’t have to depend on these tools to do something as simple as taking a shower. However, having them does give me a chance to be gentle with myself because I remember blaming myself for falling. I harshly chastised myself repeatedly for not paying attention to what I was doing before I fell – completely discounting the possibility that I might have fallen because I was lightheaded from my pain medications. I blamed myself, even though it all happened so quickly, it would have been impossible for anyone to stop the fall. As much as I wish I didn’t have to use these new tools, I’m glad I have them. Because I remember the force with which I landed on the bathtub floor; how sore my hip and shoulder were for weeks after; and my immense gratitude that I hadn’t hit my head as I fell, and I don’t want to have that experience or those feelings again – ever.

 

OutKast – So Fresh, So Clean