Note - all patient info is fictional. Resemblance is coincidental.
The Dark Spot
I don’t even really remember when it started. It didn’t really just start…it more crept towards and over me. I guess I’m really still coming to terms with who I am now. Writing that out makes a pretty big impact on me, actually realizing that who I was before is gone now by no choice of my own.
I used to love my garden. Lilacs, roses and especially orchids. I would spend hours with my grandkids in my yard, pausing from working in the soil to run and play. Just last week, my grandson graduated from middle school – it was wonderful to see him cross the stage, his head bobbing above the audience ahead of me as I sat in my chair. The world is a different place when you’re seated.
My coworkers and I used to go out and dance after a long week, celebrating another week of prosperity and the coming weekend. Sometimes my friends would tag along, and we became a close group. I miss being able to see them as often at work, but I really wasn’t able to keep up anymore. I just couldn’t do my job from my chair anymore. I knew it was coming when my strength began to wane and stocking the merchandise became so much more challenging than it really was.
It just feels sometimes like robbery, but it’s my body who is robbing my soul. The doctors told me I had polymyositis and that’s why my body began to ache. I really thought it was just the chemotherapy. Turns out my muscle disease was the sinister one that brought the cancer to my ovary. It was really crushing that I thought I could become one of those cancer survivors to only find out that my actual demon isn’t curable. I’ve lost my job and my friends. I’ve lost my perspective on the world, sometimes even being robbed of dignity by people quite literally looking down on me. I’ve lost hope for seeing my grandbabies graduate college.
The social worker has talked to me a few times. She’s a pretty nice lady, but sometimes I find myself thinking that only God can really help cure the problems that I have. Either way, she talks about resilience and the support that I have. She’s also helped me make sure my insurances are in line – I’d be lost without health insurance. We talked together about my old hobbies. The hobbies I once had aren’t really entirely possible anymore, so I find myself now living through others and being happy that they have these wonderful experiences. These days I love watching dancing shows and reminiscing when my grandkids come to visit. They usually come a day or two a month since they have to focus on school. I used to drive over to them but I’ve been too weak to get out of my chair for quite some time. My home nurse and I sometimes play games together which is a completely new interest of mine. I used to really dislike board games and puzzles but now I find that it’s something to do.
My illness has really made me think about something in particular – dignity. Before I was sick, I would’ve been really ashamed to have someone help me clean that sore I keep getting on my behind. Now it isn’t that I really love getting the help, but it’s more that I’m numb to it. The doctors, nurses, care assistants and all the other people in the hospitals and offices are always poking and prodding at you, seeing you when you’re most vulnerable – what else are you to do besides become numb? For me, dignity itself has changed its meaning to a skeleton of what it was before, but I hold tight to it – it is my personhood. I choose how I live these days, what I do and what decisions will be made, and I try to reject misguided sympathy. It is my personhood.
Personally, mornings are my least favorite time of day, but when the doctors office wants to draw blood and see me in the same day, the morning is the only option. 7 yesterday morning I was in a hurry to the doctor’s office when my power-scooter battery finally called it quits. I was so frustrated. I’ve been trying to get a new one but the insurance limits you to equipment by years. My son had an idea to try a lawnmower batter which seemed to work but I ended up being so late to the appointment that I decided to just try again tomorrow. I’ve learned that there isn’t much of a point in going when it’s too late since I can’t get the blood results the same day – I’ll make another trip anyway. I was relieved when the nurse told me it was okay and squeezed me in for today. The doctor came in with a student today which made me happy because she’s never strong enough herself to help me up. I feel bad about it, but she insists on looking at my sore on my behind. She says it’s from staying too long in the chair but what am I to do about that? I can’t walk anymore, and I refuse to let it go – what would I do without the chair? While the doctor was looking on the computer, the student asked me about the straps I use to hold my legs close together. I could see him trying to contain his interest and trying to figure out what was happening with me. It’s become something that I’ve embraced and I sometimes like to joke with the young doctors. Laughter is a great thing. Some of the young doctors haven’t found a way to relax yet and the laughter helps them seem more personal to me.
The doctor asked me so many questions. They always want to know so much. My favorite part is when we get to talk about my life and things that I used to enjoy. Today she seemed a bit cross about my blood pressure being high – I hadn’t really had a chance to fill the pressure medicine in a while, and it didn’t seem to matter in the large scope of things – guess I was wrong. Either way, if it came to it and money was tight, I would still get the medicine that helps my muscle aches over the pressure medicine any day. A dollar only goes so far.
After the doctors helped me to the bed, I began my doctor’s office ritual. I closed my eyes for a moment, relaxing, finding my happy place. So much good has come from the doctors themselves but being so reliant on the help used to make me nervous – the ritual helps me just – be – while they are doing the exam.
I felt the stethoscope moving around my chest, pressing against my body. She asked me to lay down and they helped me. I felt her feeling my stomach. Her hands felt my muscles. Sitting up again they checked how strong I was. I pressed onto her hand with my ankle muscles, still as strong as they were before. With a smile she let me know there was one last part and we were done for the day.
She examined the bottoms of my feet and her smile twisted around. The dark spot was there, and I was hoping she wouldn’t have seen it. Here we go again…
Polymyositis, Ovarian cancer, Melanoma, HTN, Sacral ulcers, Major depression
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