NL #32: For you when your life is changing

NL #32: Today is the first of a three-part series for those currently or newly facing life-changing disease in themselves or those who love them. Today's focus will be on the things and people who are helping me in this time. Tomorrow's focus will be on partners and caregivers. Day the third I'll focus on friends of those with illnesses and friends of their caregivers.

Since I stared radiation, an uncle has undergone surgery for cancer, a friend has learned she has a tumor in her eye, and two friends have shared debilitating mental health struggles. I hope that this writing may help them and others like them just in the sharing. My intent is to share my experience, not to provide advice. Each of us takes our own journey, and I won't pretend to know someone else's situation or what's best for them. It helps me to hear others' stories, so this is my story.

1) My partner Ann went with me to appointments so that she would know what was going on and could help me follow difficult news and to makedifficult decisions. We have a notebook in which she takes notes at every appointment. The two times she did not join me (because we thought the appointments weren't going to be that newsy) were the two times I've had the most difficulty afterwards. In one, I learned that I had had a "small stroke" and in the second I had an MRI (where I was in a long tube by myself for a good long time) to learn whether or not the brain tumor had spread to my spine. I lay there, in the dark, with all the beeping sounds, praying that I would not have more tumors. Ann could not have been with me in that tube even if she had been there, but I was more upset afterwards than I had anticipated and could have used her support. Now she goes with me to pretty much every appointment.

2) As soon as I knew about the tumor, we told pretty much everyone we knew. We called our families, emailed friends and said prayers of concern at church. I talked with colleagues and began looking into medical leave and disability. (Fortunately, I had health insurance, but figuring out the school district's leave system was not easy.) No one asked awkward questions, and we got lots of support that we both needed.

3) I spent a month in the hospital and someone--usually my mom or Ann and once our friend Rita--always spent the night with me. I felt I needed them there. During the night, "vampire" nurses would come to take blood samples and my vitals, and--since I'm an organ donor-- at times I suspected they needed my lungs for someone else. Even in the dark and the silence, I always knew my guardians were there.

4) Joey, a rehab nurse, gave me a lecturette on learning to let people help me. At the time people were helping me stand and shower and flush, so I felt I was asking for plenty of help, but I've remembered the lecturette and have learned to seek more help than always feels comfortable. A couple of months out of the hospital, I went on a retreat for students in an administrative training program that I had decided to enter before I knew about the tumor. Ann went with me and helped me navigate the physical environment as well as the emotional stretch of interacting with all these strangers when I had so little concept of how my future might play out. The progam's director asked me what I needed, and she convinced the school to provide a cot so that I could rest during the long classes when I needed to. My parents and each of my siblings flew to Seattle to help take care of me and to give Ann a break. Church acquaintances, who became friends, gave me rides to the university and read long articles to me. Other students gave me rides home after classes. Close friends brought chocolate chip milkshakes to the hospital and called and came to visit but didn't stay too long. To the hospital, my friend Rose brought homemade chicken and rice, which I devoured. I think it may have been the best meal I ever tasted. For the next two years, colleagues gave me rides to and from work, since a car took about forty minutes round trip, and the van for people with disabilities took about six hours round trip. Doctors, too, I have contacted for advice more often than I did before since I really don't know what's important. I take drugs and vitamins and do exercises as recommended. Just taking all the vitamins and gargling black tea keeps me busy. I have been amazed by the gracious support and depth of kindness from so many people.

5) I started socializing and working after both surgery and radiation as soon as I could, making sure to make clear the parameters of my strength. Both work and a social life have kept me connected to the world beyond my health concerns and have made me redirect, not cancel, my lilfe in the world. Friends are gracious when, in the middle of dinner, I have to lie down (at my home or theirs), and Monday Ellen went for a walk around the block with me rather than a longer walk around the park. (She did that later.) Similarly, Ann helped me find ways to modify activities that I loved before my surgery but could no longer do in the same way. I sold my bike and bought a trike; we hike on wide trails, paved when possible. I exercise at a local gym (or did. I plan to again.) I listen to audiobooks and now read on a kindle.

6) Ann and I started this blog on caringbridge as a way to communicate updates on my health. That blog, for quite some time this winter, was my primary connection to the world. In it, I have connected with long-time friends in new ways, gotten to know my family better, made new friends, and re-connected with friends from the past. Writing about my thoughts and experiences has helped me to frame my life anew, in ways other than loss.

7) I found a support group of adults with epedymomas. Because this is a rare tumor, especially in adults, it has been helpful to communicate with others who may face similar questions and challenges. Others who are going through this disease and its treatments have offered practical suggestions, resources and their experiences. I don't write to the group often, but I read it a lot. These are my people now.

8) I allow myself to rest as much as I need, which since radiation has been quite a lot, and I am gentle with myself when I can't do as much as I'd like to do. This gentleness has required practice. I have also learned to trust my sense of limitations. When I feel weary, I rest, knowing that I will exercise again when I can. In this sense, I have come to trust myself.

I can't tell you how much it means to have you on this journey with me. God bless. Mary