What Dylan Knew

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I read the most brilliant article today, and would like to share it, as well as my thoughts concerning its topics, a shortened version of which I left in comment form after the article (with a quite embarrassing typo). Anyone with MS, a disability, or know anyone with such, please read: https://multiplesclerosis.net/living-with-ms/not-born-this-way/

The author, Marc discusses, among other things, personal identity conveyed through fashion, and how it relates to him. For me, it’s only been 4 years since my diagnosis, but to say “only” seems such an understatement. I refer to everything before as My Former Life, because that’s truly how it feels. As far as appearance goes, I was never one to primp or take any extra care in my appearance, but honestly I didn’t really need to. My hair was wash and go, face usually unadorned, and it was fine that way, I certainly was never accused of being plain. My clothing style was always relaxed, but it was a style. I dressed body shape and age appropriately with emphasis on ease and comfort, but also in a flattering manner, a fashion all my own, what my friends and peers believed to be both effortless and brave, as I never spent the money and time they did preparing for the day, and as far as I was concerned the reason I didn’t make much of an effort (or feel brave not doing so) was because I didn’t really care. When I think back now I realize that I did care, just not enough to inconvenience myself, only just enough that I did choose clothes specifically, but only with care at an almost subconscious level, because really it almost WAS effortless for me. It was an afterthought, get dressed and go. All of my clothes were suited to me because I chose them carefully when I shopped, and I did spend much time shopping. Clothes shopping=fun, right? Today, not so much. Not only can I not afford to buy clothes to fit my new frame, but I really wouldn’t have the energy for a shopping excursion. As many women can attest, weight gain and clothes shopping aren’t easy companions, and just the thought of such a trip makes me feel exhausted with nervous anticipation. As such, I own one pair of jeans that fits comfortably but now has a broken zipper, one pair that fits quite uncomfortably, maybe 2 properly fitting shirts, and an assortment of pajama pants that I’ve deemed appropriate for out of the house wear. I wear slippers almost everywhere, especially if it’s a wheelchair day. Why bother with shoes? I’d expend half the day’s energy trying to put the damn things on anyway.
I try not to think so hard about My Former Life. I certainly did not do so many exciting things with my life as Marc did, but it was full, productive, fun. In my professional life I worked hard to chisel out a career. Based on education and duration I say I was a counselor, but my work experience is all over the map and mostly revolves around two tethers that are human services and entertainment. An odd combination maybe, but they were two things I’ve always been drawn to, and recognized from a young enough age that entertainment would never be a lucrative career choice, not that human services ever made me a lot of money. Throughout my life in addition to doing counseling and working with developmentally disabled people, I owned a printing business, worked at a radio station, directed tv shows, did stage lighting, professional makeup for film and camera, and in my youth, was a model and a stage actress. For fun, I was a dancer and taught dance classes. I miss dancing, and I miss counseling, and I seriously miss driving fast with the top down. For me, my car represented my freedom and nothing was more relaxing to me than hauling ass down the freeway at night, wind in my hair, cranking the music and singing along like I was the only person in the world. Now I don’t even own a car, (it may be in both our names but it’s definitely my husband’s), and when I do drive, which is becoming increasingly rare, I do so slowly, carefully, hunched over the wheel tense with concentration.
I feel as if I’ve been demoted in life. Once vibrant, exciting, fun, now dull and drab. Once respected on a personal and professional level, now quietly humored or outright ignored. I worked with disabled people, in some manner or another, all my life. I heard their stories, shared their triumphs and sorrows, and was definitely no stranger to their struggles. Of course the view is certainly different from my own wheelchair, and the experience of becoming increasingly disabled is far more nuanced than I ever could’ve imagined, but at least in some fashion or another, it is familiar. What is most difficult is this feeling of becoming irrelevant, of losing status, of being pushed aside. My memory and cognition have suffered a great deal. I don’t speak as clearly or think as quickly. As such, I’m easily dismissed. In the time it takes me to complete a thought, that thought has become irrelevant. I believe, more than ever, that I can now empathize with the struggles of increased age more than ever before in my life. In such a short time I lost my career, my youth, my appearance, my self-sufficiency, my memory, and with all of those things, my self-confidence. I find myself telling the same stories over and over again, either because I don’t remember telling them or because I have nothing new to say, and being ignored. Or telling a story about my day that becomes long and meandering because I’m unable to properly organize my thoughts, and discovering that my audience is not so amused by the retelling as I was by the experience, and can’t you just remember a grandparent or great aunt who did exactly these things? I’ll be 37 in two weeks, but now understand my 80 year old grandmother, and believe I understand why she did the things that she did. I know now on more than just a sympathetic level, none of us wants to become obsolete with great dignity and grace, we want to fight and struggle and scream our way there, to rage against the dying of the light, as it were. The only question is, do we endure this struggle internally, or for everyone to see? I’ve often joked, even on this blog, that when I’m really old and living in a home in 5 years, will I be one of the ladies who quietly stares at the wall and is otherwise a pleasure to be around, or one of the old ladies who screams and throws her poo? I still don’t know. I could see it going both ways. I can understand being filled with rage at being talked down to as if I were a child, at the impatience of others while I take a very long time to do a simple task, at the confusion of knowing all I’ve lost, of knowing that I used to be able to do these things and used to remember so much more, and that there’s no way to get them back. I really don’t know if I’ll be able to face these things with outward calm, or if I’ll show my rage to everyone who cares enough to try to help me. I guess we’ll find out in 5 years. 😉

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Grief and Chronic Illness

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Loss is a terrible thing. In life, we will have moments of loss that are often viewed as normal, many sometimes even so unavoidable they are expected and inevitable, but they still shake us so to our core we’re sometimes little able to function afterward. In our culture we don’t prepare for losses, particularly deaths, but wait for them to come, take us by surprise and knock the wind out of us.
Grief creates a very tangible, visceral pain. It literally hurts in our bodies. A study done recently showed that pain medication eases the psychological pain of social rejection.* Social rejection causes one to grieve immensely, and on a long-term, or chronic, scale. It seems that our grief for painful occurrences in life are just as painfully tangible as an upset stomach, a headache, and the malaise that many people feel while grieving.
There are two types of grief experienced in life. The acute, an occurrence that prevails with suddenness and quickly changes the topography of our lives, such as the loss of a job, the ending of a relationship, the death of a beloved pet, the sudden death of a beloved person, etc. These things occur swiftly, change our lives, but the primary event is over when it’s over and given time, we may adjust to our new lives with this change in it. We grieve strongly and terribly, mourn what or who we’ve lost, then we pick up the pieces and move on.
The second type of grief is chronic grief, and occurs when our losses are continual issues in our lives, when the things that we grieve are long-term, and ever changing, such as a chronic illness, the death of a loved one for which we cannot (or will not let ourselves) heal, chronic illness of a loved one, or news of the impending death of a loved one or beloved pet for which there is no definite time constraint (maybe a month, a year, or 10 years, we don’t know, but they’ve definitely got a terminal illness such as cancer that is incurable and will eventually kill them). Chronic grief is a terrible thing. Acute grief is expected, and accepted. One is supposed to hurt when they’ve suffered a loss. But people have difficulty identifying with the long-term pain associated with the chronic, of any sort. Chronic physical pain is beyond comprehension for many people. How can any person hurt all day every day? It must be something made up, exaggerated, stated excessively, because such a life cannot be feasible. Chronic psychological pain is just as difficult to grasp. How does one continually not deal with an issue or problem? How does one continue to hurt?
Truly, people can only suffer so much. Chronic pain of any sort tends to numb us. People with chronic physical pain often have very high pain tolerances. But also, they can have very low pain tolerances, as if their capacity for experiencing pain has been used up, and one more thing added to the list is enough to bring them to tears. Terrible psychological pain can cause the same effects. Maybe a person is just holding it together dealing with their various chronic and/or acute griefs, and that one more thing, like dropping a pizza cooked fresh out of the oven, and they burst into tears like their whole world has come unraveled.
Many of us with chronic illnesses deal with both chronic physical pain and chronic grief. We mourn the many things we’ve lost in our lives due to the illnesses that we struggle with every day. Imagine waking up one day and learning that not only are you going to suffer every day for the rest of your life, but you’re slowly going to lose your career, independence, self-sufficiency, hobbies, friends, mobility, the respect of those around you, perhaps your memory, and each day will be more difficult, more of a struggle to hold onto those few things you still have, and each day it’s possible that you’ll wake to find that you’ve lost something else, and you still hurt, everything still hurts.
I’m tired of being treated like a child when I become frustrated for the things I’ve lost. I’m tired of being told that it’s simply depression that causing me to grieve the things I’ve lost when it’s FAR more complicated than that. I’m tired of being looked at with pity, as if my mind is gone, when it’s really not me who has the problem understanding the situation. I’m tired of trying to justify my emotions to others.
Every person has a right, and even a need, to grieve their losses. If or when that grief becomes out of proportion to the loss there may be need for intervention. I had worked with people who continued to mourn the loss of a child so strongly that it was a disruptive force in every aspect of their lives 20 years after the fact. This is no longer healthy grieving, but obsession. I understand full well how grief can be destructive rather than palliative, but when each day presents a fresh wound, are we not entitled to our time to let it heal? 

* http://www.sciencedaily.com/releases/2009/12/091222154742.htm

A Ghost of Regret

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I’m not usually one to harbor regrets. Not for much of anything really. As far as I’m concerned, the choices that we make are the best possible choice we could have made at that point in our lives, and looking back after all is said and done and saying, “I should’ve done things differently, I should’ve known better…”, or even worse, “I shouldn’t have done what I did…”, will only make us come untethered. As they say, hindsight is always 20/20, and no matter how clear things look now from our presently higher perch, at the time the decision obviously wasn’t so clear. I learned this a long time ago, and rarely beat myself up over things that I should or should not have done.
However, there are a very few things in my life that still haunt me, and occasionally I find myself ruminating on the what ifs, and am especially haunted by the knowledge that losing someone or something very important to us is the single most pointed reminder that there really are no do overs in life. Once they are gone, they’re gone forever, and forever is a very long time to wish you had a second chance. On one occasion, as I was feeling a bit melancholy over such things, I wrote the following bit of short prose in late June of 2013, then promptly forgot about it, until now.

* * *
A funny thing happens during that time that you’ve been awake long enough that you’re not sure whether to continue to call it late or begin calling it early. The ghosts become real. In the daylight they are nothing but unpleasant sickness in the back of your mind, a stagnant mist of sadness and regret that is easily overlooked, seen through like a light fog on a bright summer morning. Vaporous, soft, unclear. But as night moves on to morning they drag themselves from the dark corners where you’ve secreted them away, full born, blood still dripping and waiting to sink fang or claw into the soft underbelly of your tired mind.
The ghosts become REAL. Haunting your every thought and sigh. Sickened to the point of pathetic sobs you hold them close, loving them as much as you fear them.
They are all that is left, those bittersweet memories, so much happiness and remorse that the two are inextricable. The pain cuts deep, and as dichotomous as ever, also brings a twisted pleasure. The severity of the pain reminds you of how great the loss. Without the pain, the loss somehow seems meaningless.
As morning arrives the ghosts fade, the tears dry, and a bizarre sense of wonderment sets in. The night feels as a twisted version of reality, wicked in its ability to warp the mind and squeeze the soul to near bursting. Ah, my heart. My love. How I still miss you after all these years.
And the song lyric echoes in my head: Please don’t reproach me for how empty my life has become…