Friday, September 13, 2013
It is this simple.
From your point-of-view, you have done one little thing. "I was only parking there for a minute." "I only blocked that door for a little while." "I only said something unkind once."
From my point-of-view, I run into it day-in-day-out. I hear it day-in-day-out from everywhere.
You are part of a collective and when you act within that collective from the privilege positions you have, it is not little.
Your one act may be drop in the ocean, but the ocean is real and I am drowning in it.
And that is why I am so angry.
at 10:07 PM
Friday, June 21, 2013
Saturday, April 13, 2013
Friday, April 12, 2013
Dear Me from the Past,
The journey from you to me has been fraught with burdensome lows and accelerated with victorious highs, but I cannot help but wonder how much better it might have been if you had understood that we have dignity when I was your age.
Having said that, we are doing okay. So the most important thing I would have you to know is that we are tough. We have survived lots of setbacks. We are still here.
That fact. That knowing we can survive, we can thrive, we can learn. That is the basis for my faith in the future. That is what makes life moving forward much easier than it appears some days.
Me from the Present
Thursday, April 11, 2013
Through a combination of medications, exercise and medical monitoring, I do have both blood sugar and thyroid under control (as well as cholesterol and blood pressure). I continue to eat when I am hungry and finish when I am full. I found that I did better if I waited a little longer to determine how hungry I am and what I wanted to eat. Usually, the answer is clearer and has less impact on blood sugar when I do. I also know that exercise is key. I stretch every morning and I lift weights. I hope soon to add some aerobics to this, probably deep water aerobics because of the nerve damage in my left foot. What has held me back is a place to work out with a warm pool.
But when I found this app for my tablet, a lot of stuff has come together. Mostly, I think I find it emotionally satisfying because it is a project and it has a measurable-do-it-yourself-style of defining success.
Basically the app allows me to record blood sugar, exercise, medications and supplements, health status, stress levels, pain levels, blood pressure and pulse rate. If you are into carbs counting, there is a place to do that as well. I just record whether my meals were small, medium or large. Also, I do not weigh myself, but there is a space for recording your weight. I record my pulse there and just ignore the "pounds" designation.
I do not take insulin, but insulin records can also be kept, so I would assume this little gadget would be extremely valuable information for those who have to adjust insulin depending upon food and exercise. It has a place for "pair testing" to allow you to further track insulin effects.
If you take a lot of pills (mostly supplements) on a daily basis, this is an especially good gadget. It remembers previous entries and so all I have to do to keep a medicine/supplement record is check boxes. Since I can have some memory problems when I am in pain, having a record of whether and when I last took medicine is important. This aids in that extremely well.
There is also a way to send the results over a specific period via email. I have not used this feature yet, but I would assume if one is working with a medical professional this would be a nice way to provide data for them so they can assess your situation more fully.
Wednesday, April 10, 2013
Tuesday, April 9, 2013
Today's call for writing asks us to post tips for caregivers. I don't really have much in this area. It is a one-day-at-a-time kind of life when one or both people in a couple are dealing with chronic illness and disabilities.
In March 1997, I got sick and didn't get well. What seemed at first to be a bad stomach virus, turned into months of my being bed-ridden, weak and catching every infection from any kind of bug I ran across (fungal, bacterial, viral). In a word, I was "dependent."
I won't go into all the details of what happened that year, but I do know it was the beginning of an odyssey that has so far lasted 16 years with no end in sight. My husband, Carl Wilkerson, and I had only been married 5 years when all this began. He is 8 years younger than me, so he was only 31 years old.
People often will ask me or him or both of us what he "does" for a living. They cannot know how insensitive and painful that question is. He does a lot of things. He did a lot of things. Many of these things are unpaid and yet, as I have just got hired for the Fall in a full-time teaching position, I will say right here and right now that my Master's degree, my PhD, the research work I've done, the teaching work I've done and this new job would not have been possible without the loving care and support that Carl has given me.
He has sacrificed a lot to make me functional and successful in my endeavors. While my mind knows that fibromyalgia is way more complicated than this, I sometimes feel tremendous guilt that he became sick in 2008. As a medical sociologist, I know the research that shows that caring for a family member is detrimental to the health of the caregiver. I often wonder if his life would not have been better without a disabled wife. But because of his heroic choices, neither he nor I will ever know.
I think it is toughest on male caregivers because so much of the work they do is considered "women's work." Men who clean and cook and tip-toe around the house and put their own career goals in second place are often viewed as "weak" or "slackers" by the rest of the world, who want to see a resume to measure a man's worth.
I remember an essay in a book called Dropped Threads that basically stated that if women wanted men to share more of the domestic tasks in family life, they needed to stop considering men who do these things as "not good enough." Carl is a hero and I have little tolerance for those who might suggest he is anything less than that. We've been together 22 years all told (married 21 years in October) and I consider myself to be one of the most fortunate of people because my partner in life has proven his love to me beyond a doubt and has kept his integrity and dignity while doing so.
In fact, don't ask the question at all. It is a stupid question. People "do" lots of things. We are not our jobs. We are not our titles. We are warmth, loving, generous, heroic and persistent people who take things one day at a time until they add up to a lifetime.
So let me say, publicly and loudly, thank you, Carl Wilkerson. You are my hero and I will use all my power to not let you be "unsung." That you have been a creative producer and accomplished so much in the past 17 years in spite of my illness, my disabilities and yours, is a testament to your strength, character and talent. (I love you forever.)
Oh, and if you, the reader, really care about this, you might support more funding of home care, so that so-called professional caregivers can give a family caregiver a break sometimes. Some more forward looking countries than the United States understand the value of the free labor family caregivers provide and also understand the cost-savings of supporting these heroes so that they can remain healthy.