Friday, May 25, 2018
I belong to an online support group for adults in the world who have or had an ependymoma, my brand of tumor, and can communicate in English. It’s a rare tumor, especially in adults, so we meet online with people from all over the world. One of us generally welcomes a newcomer by writing, “Welcome to the group no one wants to belong to, but we’re all so glad it’s here.” If you or someone you know has or had a brain tumor, there are supports groups for people with all kinds of tumors and the people who love and care for them at The B.R.A.I.N Trust.)
This week, a newcomer asked three good questions, and I thought you might be interested in the questions and my responses. This isn’t a typical blog entry, where I’m more likely to tell stories, but I thought you might like a primer on my experiences.
Here are her questions and my responses:
1. For those who have had surgery on a brain stem tumour, what residual deficits did you experience both temporary and permanent?
Temporary: Blind spots in my vision, hallucinations, headaches
Permanent: Nyastagmus, double vision, short term memory losses, poor balance, fatigue.
2. Have you returned to work, or your ‘life before tumour’? If so, to what level?
Six weeks following surgery for my first brain tumor, which was in my brain’s fourth ventricle and around my brain stem, I started a university program for certification programs for public school principals and program managers. I do not recommend moving so quickly. The following year, I could no longer teach in the classroom, so I worked part time at a new job in our educational service district’s administrative offices and as an instructional coach. I stopped working several years after radiation for my second tumor, which was also in the 4th ventricle but did not involve the brain stem. I think the radiation is what made me so tired. Eight years after radiation, I sleep about 15 hours a day. In the years I was still working, I stopped driving after both tumors and a bad car accident and use the bus system, which is good in Seattle, but rough with fatigue.
3. If you did not return to work, or life before tumour, what became your new normal? Where did you find meaning?
At first, I thought I would be a therapist for people with life-changing health conditions, so I went to the university for a Masters in Social Work. I successfully completed the degree, but the licensing requires more time than I can do each week, so I’ve left that idea. Now, I am writing a book and blog (wwwcantduckit.blogspot.com ), and volunteer as a facilitator with writing and reading groups of people who have experienced trauma.
My partner Ann, (now wife), of 23 years and I have a good life together, and I am lucky to have friends who are willing to do things in a way that works for me. Ann and I are both active in our church. I am a “co lay leader,” in our little Methodist church, which means I sit on half of the committees and otherwise do whatever I think helps build community there. (Basically, I have a job without a job description. Excellent!) Importantly, I've figured out how to do some things I used to do differently. For example, I ride a trike instead of a bike, hike on paved paths with help, practice yoga with variations, and read on a Kindle (where I can use a large font.) I also do a lot of writing and work to improve my craft in a weekly writers’ group and many classes. Ann and I also got a puppy, Dosewallips, last year. She's in my lap right now and is making this writing difficult, but she's worth it: very smart and sweet. I could keep going.
Though I mourn my losses, I have a good life, a meaningful life. Recently In one version of my book’s prologue, a fellow writer responded to the line, “I am determined to live a meaningful life," by saying the line seemed, ironically, meaningless. “What do you mean by a meaningful life?” she asked.
It’s a good question for any of us. I’m still thinking about it. I changed the line to, "I am determined to live a meaningful life, a life of love and service, of curiosity and laughter….” I might add, a life graced by a partner, a community and a dog.
Matt Cotcher, a guy in the support group, concluded his responses with this, “It took several years for me to understand that just because life is different, it does not have to be worse.” So I’m not Pollyanna, or at least I’m not the only one who feels this way.Glenys Frazier, also in my support group, closed with this: "I don't know what the future holds, with a gradual deterioration rather than improvement in my deficits over the years, but I try to cherish and appreciate each day some facet of this beautiful world that we are blessed to call home."
Once again, I am not alone.
Friday, May 11, 2018
A few minutes ago, I was in the middle of a blog entry about poetry when someone knocked at the door: the first time a few quiet taps, the second a little louder, and as I went down the stairs to answer the door—slow as I am—louder still.
My partner Ann’s due to come home soon, and I thought she might have locked herself out. Otherwise, I might have stayed put.
An African American woman who says she used to rent a house a few blocks from here (I think I recognized her, but I might be fooling myself) said she’d had to move when the rent soared and then moved again and the same thing happened and now she and her daughter are homeless. She told me they lived in shelters for a while and are now on a list for supported housing. In the meantime, she said they’re staying in a hotel, and she was asking for money. Her story’s plausible. Rents and homelessness are soaring in Seattle. Of course, she might have been lying.I gave her five dollars.
What should I have done? What would you do (WWYD)?
We used to have two nearby crack houses, and people would stop here regularly. At first, we listened to the stories and gave money, but we felt like suckers and soon stopped giving, and they stopped coming by.
Once in those years, a black woman, maybe in her fifties, pounded on the front door after dark one night, saying her house had been broken into, and she was afraid. She was frantic. I called 911, and the person on the phone confirmed that the police had been called to this woman’s address. We invited her in and gave her tea, hoping that might help her calm down. Before long, it became clear our visitor wasn’t leaving, so I called 911 again and the person who answered the call told me to keep trying to get her to leave.
I kept trying, to no avail, and called 911 again. The woman who answered again encouraged me to work harder, but then our visitor started screaming in the background, and the woman asked, “Is that her?”
“I’ll send someone right over.”
When the police came in the front door, they recognized our visitor immediately and called her by name. They told her they’d been to her house and it was safe, and they’d take her there and make sure she’s safe. She calmed and went with them. As one policeman walked out the door with her, the other said to Ann and me, “We get calls for this woman all the time. She’s paranoid. You should never let her in your home.”
Easy for him to say, but what if she really were in trouble? It happens. The two weeks prior, I’d been on jury duty for a first-degree rape case. The woman was allegedly (I think she was, but it wasn’t totally clear) raped in our neighborhood late at night and had run to a door and pounded until a couple let her in and called 911. Besides, in a way she was in trouble. She was scared. Terrified.
Ann and I have decided to take the risk of being scammed rather than risk not serving someone who’s in trouble. We have so many homeless and so many people with untreated mental illnesses in this city. I believe the big answer is to change the unjust system, but what do I do in the meantime?
According to the gospel writer Matthew, in the Sermon on the Mount, Jesus says, “Give to the one who asks you” (Matthew 5:42). That’s what I’ll do for now.
I’ll also advocate for systemic change, but too many people are hurting right now. One person is too many. My $5 didn’t do a lot whether or not she was in trouble, but if she was, maybe the human connection helped a little at least.