The Lady with The Purple Cane: Part One of Joanie’s Patient Story

At age 60, I am learning to love and accept the woman I am right now. This is long overdue: I never envisioned a life walking with a white cane with purple flowers, with a shiny blue rollator in the backseat of my Hyundai Tucson, the handicapped parking permit hanging from the mirror. I never thought I’d have a discussion with my husband about us getting the garage cleared out so he could get a buddy to help him plan and build a ramp in our garage, sooner rather than later.

I did not for one minute ever believe that this would be me at age sixty. There was an idea in the back of my mind that my husband and I would both retire in our early sixties and get back to finding our passions – the love of nature; the excitement of traveling the highways, byways, and back roads of America; camping and hiking in National Parks; bicycling; gardening; enjoying our grown-up children and grandchildren. Are you starting to get the picture? Life has a way of throwing us some unexpected events.

I remember while packing up our house in Burke Centre last spring discussing with my therapist how I was going to answer questions from the new folks I would meet – what happened to you? How could I best sum up that I stopped working in April of 2012 because I was so sick with chronic debilitating migraines that I had trouble paying attention in meetings, or even getting the words to come out of my mouth correctly, not slurred like I had been drinking? I’d come home from school, give myself a shot of medicine, get an ice pack for my head, and lie down on the sofa and curl up, hoping to sleep it off. I could barely take care of myself, let alone my husband, children, or my classroom of 33 students.

I couldn’t look at a computer screen or go outside without sunglasses. Over the next five years there would be spinal tumors, breast cancer, neck issues, balance issues, fibromyalgia, and falls. I can’t recall how many times I was hospitalized in the past six years. I would take a few steps forward, then a lot more backward in a vicious cycle (which still continues). How would I discuss needing to record daily my pain level, activities, food, and medication usage as data, so my doctors could help me better and justify to the insurance company that was handling my disability claim that I truly couldn’t work?

When I left teaching in April of 2012, I believed that after some stronger medical interventions from my headache specialists and resting up during the summer break I would return to my classroom in September 2012 and welcome fresh new 12-year-old faces into my life. I thought after a summer to recover that I would be back on track.

But God had other plans for me. I was hospitalized in May 2012 and a PICC line was put in me so I could do IV meds at home. It was a choice I made for pain relief; it had worked before, so it was worth a shot. I hated that line. It was uncomfortable. Fast forward to mid-August and I couldn’t taper off the meds without starting another migraine. Although it is extremely rare to get rebound headaches from that particular medicine, I had to be hospitalized again and got stronger meds. I didn’t react well to them. Instead of numbing my brain, soon I was vomiting up anything that went down. I found myself hallucinating – it was scary.

When I started coming out of it the nurse was badgering me: “What is your name? Where are you? What year is it?” I remember asking my husband to pray with me but I couldn’t remember the words to prayers that I had recited since I was five. That scared me and made me feel helpless. I was in and out of it; when school began in September I was again in the hospital and when I finally got home I was in pretty bad shape. I was weak, and it was challenging to care for myself. It was a long, physical recovery. And the headaches kept on coming back.

But I survived that. I said, “never again,” but soon enough I was hospitalized in a headache hospital in Philly. They carefully monitored me and the drugs running through my bloodstream. I survived and felt safer there. Thomas Jefferson University Hospital had some of the top doctors in the field and all the nurses knew how to take care of headache patients. I went home weak and my headaches returned rather quickly. When I was released they told me I could only treat any type of body pain two times a week. Yes, that even included Tylenol. Any more and I risked rebound headaches again. I was angry — how could I have a life this way? By the following spring, I knew I would never return to work. It was extremely hard to accept. As I resigned, I told my principal that I hoped I could at least sub or tutor one day. That never happened.

I didn’t have any idea how to accept this loss, and I sincerely thought that I would someday get better. By then I had an active prayer life and had joined many groups. But I could never do all the reading and preparation, or attend all the meetings of bible study, prayer groups, and book clubs. I continued to explore this path of my spiritual life. Somehow I convinced myself that if I was stronger, more faithful, God would take this pain from me. That didn’t happen, but I made friends with the nicest, kindest, and caring community I ever had. Now, years later, they still pray for me and my husband, Dave, and I am grateful because I pray for them, and who doesn’t need prayers? All of us struggle, that’s life.

To be continued in two more parts.

About the Author: Joanie Evans was born and raised in Briarcliff, New York in the house her father built. She studied sociology and received her bachelor’s degree from the State College at Oswego, NY. She met her husband her first year in college and they married after her graduation in 1980. From there she lived and worked in Tucson, Arizona while her husband was in graduate school. They moved to Northern Virginia, as her husband got a job working for the federal government and Ms. Evans found out she was pregnant with their first child. She wanted nothing more than to be a stay-at-home mom. Over the next 15 years she managed a household with three kids, two dogs and a lot of activities. She returned to the work force when her youngest was 6, first as a preschool teacher and then several years later as a 6th grade teacher. She began fighting migraines more frequently after her third child was born until she had to leave work because of them. She has been working hard to regain her health ever since and has deepened her spiritual life considerably along the way. She recently moved with her husband and two dogs to Richmond Virginia, where both of her daughters live with their families, and just an hour + from her son and his wife in Charlottesville, VA. On her good days she is writing her memoir, enjoys quilting and antiquing, exploring Richmond, and staying active in a heated pool year round.

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