On the bus to PhiladelphiaA month or so ago, the battery of the used iPhone I had purchased a number of weeks previously failed so I bought a new battery over the Internet and tried to install it. Following one set of instructions, I tried to open the phone but became impatient with my inability. I ended up breaking it just trying to get it open. I’m still not sure the Alzheimer’s caused it or not. More significant, however, is that my impatience led me to try to force it. Ordinarily, I think I would have just stopped and taken it in for professional installation.
I then bought another used phone over the Internet but within weeks this battery needed replacing, too. (Apparently the iPhone 3G is notorious for a short battery life.) I decided to try—very carefully this time—to install the new battery again. I looked up a different set of instructions, which advertized the task as relatively simple for anyone with a little experience. I enjoy being able to do little tasks like this, especially when they save you $30 or so. This time, though, I read the directions through thoroughly ahead of time. They were very clear but complicated. After reading through about 23 steps and eight different electronic connections that would have to be carefully disconnected (and the battery isn’t even out, yet), I decided I wouldn’t chance it. Under other circumstances, I would have considered it a challenge and taken it on. But I know that somewhere in the middle of those 23 steps or beyond, I would have lost my way. So I’ll pay the $30.
Marja and I are getting comfortable talking about the disease and our future … and even joking about it. Unfortunately, I can’t remember examples. I’ve bought a little pocket notebook that I’m beginning to carry around for jotting things like that down.
I’m on the bus up to Philly to see Karin and then will leave tomorrow AM for Boston to spend a few days with my sister Lois and her husband Fred. I haven’t told her about the Alzheimer’s and I wanted to do it face-to-face. Our last attempt to get together was short-circuited by Hurricane Sandy. I’m not sure what to expect. I think I’m looking forward to it as a way of tightening the relationship with Lois.
It sometimes crosses my mind that perhaps I’m taking the Alzheimer’s too seriously by needing to travel 800 miles and take five days. I also worry that making the disease so important in relationships is just narcissistic: Lots of people have Alzheimer’s, but you don’t hear them trumpeting it about. I’m even trying to figure out some way of visiting my other sister Laurie and her husband Paul on our way back from our Christmas in Napa. It would involve getting off in Chicago and taking the bus to Minneapolis.
I realize that things will almost certainly change, but these few months have made me happier and more content that I have been in a long while. Gone is the sense that I should be doing more. It’s okay to take some time off, to give up some projects that don’t seem appropriate. I think what I find most freeing, though, is that I don’t feel the same necessity to live in the future, fearing the judgment that will come if I don’t do it right. I have felt much better, for instance, just responding to the tasks that come before me rather than having a set idea of what I should be doing ahead of time.
Relationships are closer, especially with people whom I’ve told. Before our leadership team meeting on Sunday, Kent asked how I was. It was not just a greeting. He wanted to know how things were going for me in the light of the disease. Dawn Longenecker wants to get together … just to talk. I’m aware of the gift of being in the Eighth Day community, even among those who don’t know my diagnosis yet; I feel closeness, support, love that have always, I’m sure, been there. When I talk with my children, it’s deeper. It feels sometimes like I’m in a different, better world.
Thank you, I very much appreciate you sharing your thoughts.ReplyDelete
I am approaching the end of my career as a nurse, family therapist and Alzheimer coach. I too find myself wondering what I am to do next and find little interest or energy to pursue it. I'm wondering if this is just the time of life I'm in or a change in my thinking. I'm entering a research study for a drug for pre-symptomatic people with dementia. I don't know if I will qualify for the study but it will be good to find out if I have the protein in my brain through a PET scan which is part of the elimination process/acceptance.ReplyDelete
One of the things I've learned through reading the comments to my blog is that there are lots of us having symptoms that lead us to wonder about whether we are on the path to dementia. I used to think that the difference between normal aging and early cognitive impairment was easy to detect. I no longer think so. So we live with the uncertainty until time makes things clearer. Patience is, after all, a virtue I'm much in need of, so this gives me an opportunity to practice.Delete