You think after 12 years that the feeling changes somehow. But the stars don't change and the seasons don't change. No, time doesn't heal all wounds: that's not how it works. Rather, wounds heal time - you suddenly find, after the hard work of grief, that this hard thing has made you take the hard step and you have grown. You may look more contorted, more wrinkled, more bent, more scarred. But inside the heart beats with a deeper tattoo. Grief does not depart - don't let anyone ever convince you that it does. When you learned to walk, didn't you fall? Didn't it hurt? Didn't you cry? Your legs didn't go away, though. And grief, which gives the soul perambulation, doesn't end. Thr grief gives you a way to journey. It allows you to walk, to fly, to purchase new horizons, to see new worlds, to listen more attentively.
Lives and Souls
Winter Things (A knitting book?)
I’m writing with a full heart, and wonder at how quickly my life is about to change. I have been working and wishing and hoping and at times, yes, wailing over my predicament, and now, at last, the road is clear.
For the last two years I wrestled with the problem of my deteriorating health, especially during the winter months, when I became increasingly non-functional. Last January and February my stiffness, pain and fatigue became so extreme that I began to have trouble keeping proper food in the house and doing basic chores like unloading the dishwasher. I stopped bathing every day, partly because I was so tired, and partly because my skin rebels in cold weather and starts to break out into “atopic dermatitis” – extremely itchy bumpy rashes. I scratched them in my sleep and I would bruise and bleed. I had to take care to wear loose clothing or the normal chafing of a regular pair of pants would increase the problem. I finally found that using pain killing antibiotic ointment on them helped with the itch, also. I had to apply lotion every day from head to foot to keep the rashes from getting any worse. And so I just started washing just my hair and “the parts that count”. I was looking for any way to reduce what I had to do in a day’s time. I had trouble getting enough laundry done to wear clean clothes to work and started wearing the same pants multiple times.
This was not as bad as it sounds because I was wearing two pairs of pants then, to keep warm enough and to try to protect my skin. So I re-wore the outside pair, the bigger pair. Still slovenly, especially when you tend to get road salt guck on your outside pants. I felt self-conscious that people were probably thinking I was putting on a huge amount of weight. But I had no choice.
This was just part of what I did when I decided to make a focused effort to stay warm. I found very thick merino wool socks and wore those over my regular socks, and wore my ankle boots every day. In a catalog I found shoe liners that are from the same material developed by NASA to keep the moon’s cold and heat from permeating the boots of the astronauts. So I bought them and tried them in my boots and in my slippers. My condo is on a concrete slab – huge mistake. So I had been walking around the house in my “space boot” style slippers and still feeling like I had blocks of ice from the ankles down. The liners really helped a lot. In Walgreen’s one day I noticed that they had hand and foot warmers that you open and shake to activate and that they would last long enough to get me between home and work. So I started using them every day, until I realized that they were increasing my neuropathy, so I had to stop. I muffled myself by wrapping my long chenille scarf around myself with hood on, so I was completely swaddled. This kept me warm, but meant that my peripheral vision was limited, which is not a good thing in the neighborhood I work in. You have to watch for predators between the parking lot and the door of the building. I had to hope that they’d slip on the ice and not get me. For weeks the sidewalks went un-cleared and were a torturous mess of re-frozen foot prints, slush and slop. The parking lot had been cleared, but refroze into the same sort of mess, plus we had to navigate over piles of frozen ice and gravel that the plows had left piled in our paths. I added a space heater in my office because we had been moved to a top floor “penthouse”, which basically meant you were in the attic and it was as cold as hell. Our building has steel bars running through the walls that conduct the outside temperature in. Brilliant. I swear you could stick your tongue to them. I wore gloves at my desk while typing. I worked to find very thin cotton gloves that enabled me to still use my trackball and type pretty well. I carried a blanket to some meetings in especially cold rooms, and brought my gloves.
All of this helped, but added to my exhaustion. I remember once walking into work from the parking lot and seeing another woman walking happily up the sidewalk with fashionable high heeled boots, bare/panty-hosed legs and bare head, while I was waddling in with my double pants, double socks and boots, swaddled up like an Eskimo --and with about the same peripheral vision, swinging my body side to side to watch for traffic and keep my feet placed safely on the ice. It was about 20 degrees that day.
And then there was the pain. Daily, every day between about 4 and 6 o’clock p.m., my neuropathic pain would flare. That meant that a slow burn would begin along my spine and radiate out along my ribs, below the bra-line and above the waist, sometimes extending around to the front ribs. And that slow burn would increase until it felt like I had no skin or that my nerve endings were hanging out. But at the same time, my flesh would swell subtly. There was never any visible sign of this pain except that my bra would become tighter. I sometimes had to let it out twice within a few hours as my flare set in, so started wearing bra extensions religiously. Sometimes the chiropractor or massage therapist commented that I felt “spongy” or that my tissues felt thick back there, but otherwise there was nothing they could detect palpably either. But to me it felt like extreme “road rash”, as though all of the skin on my torso had been flayed. I wanted to take off my clothes and go lie down, especially the accursed bra. Once even after I took the bra off, my skin hurt so bad that I could not put clothes on at all. I drew the blinds and sat naked with my skin touching nothing at all but the air, and the air itself hurt.
I decided that the bra was my worst torture device and I have since waged war on it, trying to find a substitute object that would keep me decent in proper society, but not have a band across the back to increase my pain. I’ve been wearing tightish camisoles found at Kohl’s, but “coverage” is an issue. I’m still working on that one.
For that daily pain, I took Darvocet, which has been my friend for over 10 years. I find that it helps the pain, but does not impair me so that I cannot work. It does not affect me like it does for normal people – I don’t have to lie down drooling on the couch. My pain system is not normal. Sometimes it feels like the pain “soaks up” the medicine so that it does not affect me as much. I have noticed that if I take it when my pain is not as severe, it does affect me with a little bit of “loopiness” or fuzzy-headedness. I have also experienced this when the doctor reduced the dosage of one of my maintenance meds, that the Darvocet suddenly started affecting me more. I became more like a normal person with their reaction to that drug when I had less pain and so needed less maintenance med. Weird.
To get back to my story, I was in this state for several months in the winter of 2008, and had been to a lesser degree in 2007. I focused all of my energy on caring for myself, with the added regime of cold management, and on working. I needed to keep my job and do well in it. Besides, I loved my job and felt that what I was contributing was important. I dug in and tried as hard as I could to continue going to the office, in spite of the difficulties and the pain. I did the minimum around the house, ate a lot of cereal for dinner, and a lot of Amy’s frozen foods. And I rested, usually “putting myself to bed” as soon as I got home from work at least one evening a week, and usually being “down” at least one day of the weekend.
Hence my difficult decision to leave, to seek employment in the South or West, where it would be warmer and I could possibly turn back the clock on my disease to some extent. It would be worth the try, and if I got any relief it would be a success. Otherwise, I would have to seek disability benefits from my employer. And there’s an entire saga about that situation there’s no sense in sharing.
But I came here to attempt to express my sense of relief and joy that this “cold regime” will soon be over for me. I really did it! I found a job in a better climate: Tucson Arizona, so beautiful, with palm trees, “cactici” as Sis says, AND mountains. I’m in heaven!
But the emotional wounds I carry from my experiences in the cold with this disease are still with me. I didn’t lose them in Tucson. I can already see that my wounds are healing time, putting into the distant past all of the time that I suffered. My wounds are what have made me strong enough to seek this change, to dig in with true grit and do what needed to be done. The wounds did it, and my wonderful support system of family and friends.
Friday, December 12, 2008
Wednesday, December 10, 2008
Growing Up
Do you ever have those thoughts, even now, as an adult, like “Hmmm! I’m really a grown-up now!” I do. I still have those feelings often. In a lot of ways, I’ve never gotten away from the little girl on County Line Road. I carry her with me, still, along with her expectations and surprises.
The first time I encountered this in a big way, I was sitting at the top of the Marriott hotel in San Francisco, enjoying the view and a drink with a friend while on a business trip. It was one of my early trips, and Little Becky had not flown before going to San Francisco for the first time, for a human resources software conference. Little Becky could not have imagined herself in such a remote and stylish setting, ever. Little Becky was going to be a Mother and a Teacher. That’s all I ever thought about being, really. Well, I’ve grown up to be those things, and more. Much more.
I didn’t know, then, that learning and evolving into a wiser and better person would become a life-long habit, that my job would sometimes speak the least about who I am, that my work could take me into new worlds, that I would ever get to see the earth from the sky, or the massive cities that I have visited. I didn’t know there could be so many people in the world, all doing their diverse work. I didn’t know that I could be one of them. I’ve learned since, that everyone carries a child within them. Mine has been surprised sometimes when I’m out driving, thinking, “Wow, I really am a grownup now!” Mine is really surprised that I am actually going to relocate. I’ve never done that before. That’s something that other people do, not me. “Wow, after I do that, I’ll really be a grown-up!” What does your inner child think about your growing up?
The first time I encountered this in a big way, I was sitting at the top of the Marriott hotel in San Francisco, enjoying the view and a drink with a friend while on a business trip. It was one of my early trips, and Little Becky had not flown before going to San Francisco for the first time, for a human resources software conference. Little Becky could not have imagined herself in such a remote and stylish setting, ever. Little Becky was going to be a Mother and a Teacher. That’s all I ever thought about being, really. Well, I’ve grown up to be those things, and more. Much more.
I didn’t know, then, that learning and evolving into a wiser and better person would become a life-long habit, that my job would sometimes speak the least about who I am, that my work could take me into new worlds, that I would ever get to see the earth from the sky, or the massive cities that I have visited. I didn’t know there could be so many people in the world, all doing their diverse work. I didn’t know that I could be one of them. I’ve learned since, that everyone carries a child within them. Mine has been surprised sometimes when I’m out driving, thinking, “Wow, I really am a grownup now!” Mine is really surprised that I am actually going to relocate. I’ve never done that before. That’s something that other people do, not me. “Wow, after I do that, I’ll really be a grown-up!” What does your inner child think about your growing up?
Monday, December 8, 2008
Dream Catcher
Back to work today, but I carry a talisman with me: a Navajo dream catcher, hung from my rearview mirror. I found it at a Tucson airport shop and thought it just may help to get me through these next weeks. Staring at the snow through an oh-so-desert dream catcher. Yes, it may help…
Sunday, December 7, 2008
The Admiral’s Club
As I came through the O’Hare airport yesterday on my way home from Tucson to Columbus, I heard the overhead announcement in the American Airlines terminal about the Admiral’s Club being available to members. They added that the Club is also open to all members of the U.S. Military. “Isn’t that great”, I thought, “That they honor the ones who have worked so hard and are likely on their way to unknown hardships and fright, or who are possibly on their way home from hardship and terrors: those who are especially fatigued and needy.”
And then I remembered the day that I was especially fatigued and needy and did not get the same warm welcome.
I can’t remember now which trip this was, but I remember that I was alone coming back from a business trip and exhausted beyond being fully functional, and having severe fibromyalgia pain. I had a 3-hour layover at O’Hare and I realized on the flight that I was not going to be able to endure the ruckus of O’Hare, and I could not face the long walk to my connecting gate. So, for the first time in my life, I asked for a particular kind of help that was unusually difficult for me.
At that time I had not faced my fears of “disability”. I had not made peace with that word, even. Still, I needed help, so I asked the flight attendant if I might have some assistance at the gate, a ride of some sort to my connecting gate. I was hoping for the cool golf-cart thing that speeds around. She made the call ahead, but when I ambled awkwardly and very stiffly off the plane, there was nothing there to take me anywhere. So I asked the attendant at the gate counter about it. She said, “You’re the one needing a wheelchair?” “Yes, I am the one.” “Oh, well they’re not here yet, you’ll have to wait, but they are on their way.” This said with a raising of the eyebrows and a rolling of the eyes. It was a very busy day at O’Hare and she no doubt had her hands full and probably thought, “Great, now I have this whiner on my hands and she looks to be perfectly fine. Some people!” You could see that all over her face. So now not only was I stiff, tired, and in pain, this woman was adding more to my discomfort by treating me disrespectfully. That was yet another reminder that most folks don’t understand that some other folks are in a limbo between “disabled” and “well”. It doesn’t seem to occur to them that there could be a category of people who can sometimes walk and sometimes cannot. And that you can’t tell these categories of people apart by looking at them, and that the same person can change categories from day to day or hour to hour.
So I waited and eventually a young man came with a wheelchair. He kindly helped me on board, although I was awkwardly bumping my feet on the flap things that hold the feet. He also chatted me up nicely as he rode me to my gate, and wished me well and hoped I would feel better. As we approached the gate and I realized the Admiral’s Club was just next door, I decided to disembark there and see if I could plead for a quiet place to rest there.
He let me off in the lobby of the Admiral’s Club and I asked at the counter if it would be possible for me, a non-member, to rest there, because I have fibromyalgia and was feeling very ill and massively fatigued. What did it cost to be a member? And could I maybe pay by the hour just this once? If they have room, could I use some space to lie down until a member might need it? Well, the membership cost was too high – more than I could consider since I would probably use it very seldom. And there was no cost per hour, but I could pay $50 for a trial day which would be applied to membership if I decided to join. For me, this meant that I would pay $50 for a few hours. I asked the woman if they could perhaps accommodate me like they would a person who is disabled. Did they have a place for people with disabilities that I could go? Or is this the place they would go? No, they did not have a place like that, and neither did O’Hare. This was it. She was being nice, but I could see she did not believe me, really, or was very skeptical. I mean, wouldn’t everybody like to cook up a story to get to use the Admiral’s Club? And she probably got characters coming in there all the time with crazy reasons they needed to be let in. It was her job to make sure only members got in.
So, with a big sigh and thinking I must be crazy, I paid the $50 and went in. I told myself it was the cost of being in the world with this disease and I just needed to get over it and get used to paying it. The alternative was to not “be in the world” and I didn’t care for that option.
People – 80% men, it seemed – were lounging in cushy chairs, checking email, reading, munching snacks and enjoying cocktails. There were no couches, but one area had upholstered cube sort of furniture, so I pushed three together, rolled my bag and coat together to make a pillow, hugged my purse to my chest and lay down on my side. I’m sure it was unusual, and a few people looked a little askance, but got over it quickly and I was past caring. I was hurting too badly to fall asleep, so there was no danger of that, but I did get some relief and did not have to endure the noise of the terminal, and for that I was very glad.
When it was time to go I sat up, packed up and went out, with wrinkles on my face from the coat. The woman at the counter nodded very kindly and sympathetically said, “I hope you are feeling better.” And I said I was, a little.
So today, when I heard the announcement about the Admiral’s Club, that all came back to me. I was glad that the military personnel were being taken care of by American Airlines. And I wondered, if possibly the next time a person with fibromyalgia wandered in exhausted and hurting and they had room to spare, they would get in. Maybe if enough of us keep asking, we’ll get in. Maybe, if we keep showing that we can look normal and not be, that we can hurt and not show it, those other people – the ones that don’t get it, will.
And then I remembered the day that I was especially fatigued and needy and did not get the same warm welcome.
I can’t remember now which trip this was, but I remember that I was alone coming back from a business trip and exhausted beyond being fully functional, and having severe fibromyalgia pain. I had a 3-hour layover at O’Hare and I realized on the flight that I was not going to be able to endure the ruckus of O’Hare, and I could not face the long walk to my connecting gate. So, for the first time in my life, I asked for a particular kind of help that was unusually difficult for me.
At that time I had not faced my fears of “disability”. I had not made peace with that word, even. Still, I needed help, so I asked the flight attendant if I might have some assistance at the gate, a ride of some sort to my connecting gate. I was hoping for the cool golf-cart thing that speeds around. She made the call ahead, but when I ambled awkwardly and very stiffly off the plane, there was nothing there to take me anywhere. So I asked the attendant at the gate counter about it. She said, “You’re the one needing a wheelchair?” “Yes, I am the one.” “Oh, well they’re not here yet, you’ll have to wait, but they are on their way.” This said with a raising of the eyebrows and a rolling of the eyes. It was a very busy day at O’Hare and she no doubt had her hands full and probably thought, “Great, now I have this whiner on my hands and she looks to be perfectly fine. Some people!” You could see that all over her face. So now not only was I stiff, tired, and in pain, this woman was adding more to my discomfort by treating me disrespectfully. That was yet another reminder that most folks don’t understand that some other folks are in a limbo between “disabled” and “well”. It doesn’t seem to occur to them that there could be a category of people who can sometimes walk and sometimes cannot. And that you can’t tell these categories of people apart by looking at them, and that the same person can change categories from day to day or hour to hour.
So I waited and eventually a young man came with a wheelchair. He kindly helped me on board, although I was awkwardly bumping my feet on the flap things that hold the feet. He also chatted me up nicely as he rode me to my gate, and wished me well and hoped I would feel better. As we approached the gate and I realized the Admiral’s Club was just next door, I decided to disembark there and see if I could plead for a quiet place to rest there.
He let me off in the lobby of the Admiral’s Club and I asked at the counter if it would be possible for me, a non-member, to rest there, because I have fibromyalgia and was feeling very ill and massively fatigued. What did it cost to be a member? And could I maybe pay by the hour just this once? If they have room, could I use some space to lie down until a member might need it? Well, the membership cost was too high – more than I could consider since I would probably use it very seldom. And there was no cost per hour, but I could pay $50 for a trial day which would be applied to membership if I decided to join. For me, this meant that I would pay $50 for a few hours. I asked the woman if they could perhaps accommodate me like they would a person who is disabled. Did they have a place for people with disabilities that I could go? Or is this the place they would go? No, they did not have a place like that, and neither did O’Hare. This was it. She was being nice, but I could see she did not believe me, really, or was very skeptical. I mean, wouldn’t everybody like to cook up a story to get to use the Admiral’s Club? And she probably got characters coming in there all the time with crazy reasons they needed to be let in. It was her job to make sure only members got in.
So, with a big sigh and thinking I must be crazy, I paid the $50 and went in. I told myself it was the cost of being in the world with this disease and I just needed to get over it and get used to paying it. The alternative was to not “be in the world” and I didn’t care for that option.
People – 80% men, it seemed – were lounging in cushy chairs, checking email, reading, munching snacks and enjoying cocktails. There were no couches, but one area had upholstered cube sort of furniture, so I pushed three together, rolled my bag and coat together to make a pillow, hugged my purse to my chest and lay down on my side. I’m sure it was unusual, and a few people looked a little askance, but got over it quickly and I was past caring. I was hurting too badly to fall asleep, so there was no danger of that, but I did get some relief and did not have to endure the noise of the terminal, and for that I was very glad.
When it was time to go I sat up, packed up and went out, with wrinkles on my face from the coat. The woman at the counter nodded very kindly and sympathetically said, “I hope you are feeling better.” And I said I was, a little.
So today, when I heard the announcement about the Admiral’s Club, that all came back to me. I was glad that the military personnel were being taken care of by American Airlines. And I wondered, if possibly the next time a person with fibromyalgia wandered in exhausted and hurting and they had room to spare, they would get in. Maybe if enough of us keep asking, we’ll get in. Maybe, if we keep showing that we can look normal and not be, that we can hurt and not show it, those other people – the ones that don’t get it, will.
Saturday, December 6, 2008
Dream Maker
“…Unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.” - Edith Wharton
Home from a life-changing adventure, I’m compelled to pick up my “pen” and write. My heart is full of awe at what I have achieved, and at the support that my loving family and friends have provided me. I have a glut of stories and thought pouring out of me, and now, at last, is the time to blog. Besides that, it will have the practical purpose of keeping those who love me close in my heart, and me in theirs. I can pretend that I am speaking to all of those loving hearts, and remember how I have been blessed, as I work to make new dreams.
You will find some short essays or stories about events and happenings that have affected me recently in ways that tweaked my thinking, helped me along in some way, and prepared me for my “new life”. Some of you liked coming in and seeing what was on my frig in the way of new thoughts and ideas that had recently struck me (including the funny stuff, like “Toxic Wenches”!) so I’ll share some of those, too.
Who could have imagined that Little Becky from County Line Road in Wadsworth, Ohio could grow to be what I am now, a woman who is overcoming large obstacles and still “becoming”.
Home from a life-changing adventure, I’m compelled to pick up my “pen” and write. My heart is full of awe at what I have achieved, and at the support that my loving family and friends have provided me. I have a glut of stories and thought pouring out of me, and now, at last, is the time to blog. Besides that, it will have the practical purpose of keeping those who love me close in my heart, and me in theirs. I can pretend that I am speaking to all of those loving hearts, and remember how I have been blessed, as I work to make new dreams.
You will find some short essays or stories about events and happenings that have affected me recently in ways that tweaked my thinking, helped me along in some way, and prepared me for my “new life”. Some of you liked coming in and seeing what was on my frig in the way of new thoughts and ideas that had recently struck me (including the funny stuff, like “Toxic Wenches”!) so I’ll share some of those, too.
Who could have imagined that Little Becky from County Line Road in Wadsworth, Ohio could grow to be what I am now, a woman who is overcoming large obstacles and still “becoming”.
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