Before I get into the topic I’d really like to discuss today, I’ve got a couple of items of business. First of all, I did call TSE about Greta’s tendency to interact with dogs while working. I did not do it on the day I said I would, but I did do it. It turns out that, as I suspected, my corrections weren’t as effective as they could be. The instructor I spoke with coached me on my technique, telling me to begin correcting her instead of warning her as soon as Greta gave herself away by pulling. I also re-read the lecture that TSE sent home with me about discipline and control and realised that I had lost my pattern of “correct and praise, correct and praise.” I did a lot of praising, just not in connection with corrected behaviour. So, I anticipate improved work in this area within a few weeks as my discipline technique improves.
Secondly, a shout out to the wonderful employees at Dixie Stampede in Pigeon Forge, TN. That shout would be STAMPEDE! Ok, goofiness aside, for those of you who don’t know what the Dixie Stampede is, it’s a southern equestrian-themed dinner theatre. One of their signature quirks is that you don’t get silverware with which to eat your chicken, baked potato, slab of ham, and roll, so instead of applause they ask for a lot of boot-stomping. Now, this means that the wooden stands vibrate a lot. So, when my husband told the ticket agent that we would be bringing a service dog they moved our seats to the top tier of the stands, which is part of the solid structure of the building rather than the wooden stands. They were concerned that the boot-stomping stand vibrating would bother the dog. They also cleared out an extra seat along the narrow table, so Greta had plenty of room. This is well above and beyond what they are required to do, which is simply admit her. They went overboard to make sure we were comfortable – and they even have been early delicious gluten-free menu! So, thank you, Dixie Stampede, for your commitment to the comfort and entertainment of all of your guests and the accommodation of the disabled, and thank you for an excellent segue into our main topic for the day. Gluten.
Ok, not gluten specifically. Acquired disabilities.
No, a gluten sensitivity is not a disability, but it is a good metaphor that I plan to use in a minute, so stick with me. What I’m talking about are acquired disabilities, disabilities people aren’t born with. These are disabilities that aren’t degenerative conditions that develop over time, these are the results of accidents, combat or other line of duty injuries, sudden debilitating illnesses, surgical complications. These are sudden, unexpected “one day I was fine, and now…” kinds of disabilities. These are shocking, tragic, sometimes sacrificial events that dramatically, and often traumatically, change lives in the blink of an eye.
Last year, almost overnight it seemed, I developed severe sensitivities to both wheat gluten and bovine dairy products. This is not a shocking, tragic, life-altering event, but as I experienced the changes these sensitivities made in my life it gave me some recognizable emotions to examine, on a smaller scale I could begin to empathise with people who found their physical bodies and their physical lives suddenly altered in a way they never expected or never wanted.
I was born disabled; my condition is degenerative at the pace of a winter glacier with analysis paralysis on which direction to slide. But I have always understood that my experience with my disability is vastly different than that of someone who is blinded because of an injury or an illness. I never had to deal with a sense of loss because I never knew what I was missing. I knew I was missing something, but I’d never experienced it. I’ve never had the independence of driving, the ability to skim a book to see if it interested me, I’ve never read a menu board or menu booklet at a restaurant, been able to see forms to fill them out. But I have friends who have done all of things, and then one day had all this independence and self-efficacy snatched away.
When you’re born with a disability, gradual or otherwise, your psychological development includes a lot of acceptance and adaptation and confidence building. But when you suddenly find your vision, your balance, strength, hands, height, or other capacity suddenly snatched away, you find yourself grieving.
It took me a long time to acknowledge the symptoms of my sensitivities, partially because I didn’t want to believe it. I knew what I was feeling, I had a pretty good idea what the problem was, but I did nothing and said nothing because I could get by without people noticing and because I didn’t want to make changes. Now, if you lose your vision or a limb or something it’s a little harder to pretend nothing has changed. It is, however, possible to refuse help, to retain the illusion of independence. This can also manifest in accepting some kinds of help and not others, such as accepting peoples’ help but not technology, or vice versa, or help with some tasks and not others depending on how the person organizes his daily tasks in a hierarchy he believes reflects on his independence and level of “adult-ness.”
This is denial.
After I got over my denial I found myself irritated every time I had to fix a meal because every time I wanted to eat I had to think about what was in each ingredient. A lot of my staple snacks revolved around bread and cheese in various forms. I don’t really enjoy cooking. I never have. It’s time-consuming and generates a mess I have to clean up, it’s repetitive, and…well, I find it boring. Some people really love it; I don’t. It’s a matter of taste, pun most emphatically intended J
So, when I found out that now I have to think about ingredients, shop differently, and spend time thinking about food that I’d rather spend thinking about psychology, martial arts, or writing, I found it to be really, really irritating. I complained, out loud and in my head, in as humourous a method as possible to try and lighten my mood, but every time I went into the kitchen I was reminded that my body had betrayed me, suddenly, without cause and without warning. Eventually I decided that I didn’t want to give up that much of my daily joy to something that small, so I have decided to learn to like cooking. That…is a work in progress, but it is, in fact, in progress And once again, this is a miniaturization of what a person feels when he suddenly finds he needs help getting out of bed into a chair and from that chair onto the toilet, or that because he’s in a wheelchair his countertops in the kitchen are too high, he can’t reach the top shelf in the refrigerator, and he has to install a ramp to the front door of his house so he can get in his car, which needs to be modified, or that he needs to re-learn how to drive. Or that he can’t drive at all to, say, get groceries, go to work, go to the doctor, or even just…go for a drive to blow off steam. How infuriating must it be to suddenly find that, through no fault of your own – or worse, through the fault of someone else – you now cannot live without being utterly dependent on another being. You go from provider to burden, from independent achiever to irrelevant patient.
This is anger.
So somewhere after deciding that I Really did have food sensitivities and deciding that I needed to learn to love cooking I started experimenting with my diet, trying to see if I only had one sensitivity and the symptoms were just masking the other, or if I could still eat dairy if I took lactase supplements. No dice. Or, if I may be so nerdy, natural 1. Then I decided that I could live with the symptoms of just a tiny bit of dairy or gluten every once in a while. I prayed for the problem to go away. What this looks like in someone who has suddenly lost their hearing or a hand or has severe motor deficits following an injury might be something along the lines of the traditional “making a deal with God,” but more commonly still refusing some kinds of help, going to get multiple opinions from different doctors, trying experimental therapies or natural remedies – wait, I’m not saying natural remedies don’t work, I’m just saying that yoga isn’t going to restore your hearing or restore dead nerves. These people might seek solace from their anger in court procedures, law suits, investigations, holding someone accountable in some way. Closure will make me feel better, right? If they’ll just admit that they were wrong, if they’ll just pay for the repairs on my car and my doctor bills…
This is bargaining.
The next stage is one with which everyone thinks they’re familiar, depression. Depression in grief and clinical depression, however, don’t always, or even often, resemble one another. They share common characteristics, but not all of them, and their durations and severities are different. According to the Diagnostic and Statistical Manual of Mental Disorders– 5, the depression associated with grief may include delusional guilt (the belief that something out of one’s control is one’s fault, for example), lack of motivation or interest in daily living activities, former hobbies, and relationships. The emotions can be emptiness, sadness, “blah” – no kidding, “blah” as a feeling descriptor is in the DSM-5. If the depression stage of grief lasts longer than six months or reaches dangerous levels then it can be classified as a major depressive episode, or major depressive disorder. If you suspect you or someone you know is experiencing a major depressive disorder or major depressive episodes, please encourage them to seek counseling. Grief is natural, but that does not mean you have to, or should, do it alone and unaided. Natural grief does not include suicidal ideation or self-harm. If you or someone you know exhibits these thoughts or behaviours, please contact help immediately. For suicidal ideation, call 911. For self-harm, strongly urge counseling. Self-harm is rarely, but occasionally, associated with suicidal ideation; the two behaviours serve different purposes and should not be confused with one another. Accusing someone who is harming himself of trying to kill himself will only make him feel more isolated and misunderstood. People who are in distress deserve the respect and dignity of being given the benefit of the doubt when they express themselves.
What does natural grieving depression over a newly acquired disability look like in more practical terms? Crying for “no apparent reason,” difficulty getting out of bed, lack of interest in hobbies and activities still within the person’s capacity, self-isolation from relationship are all likely presentations. For example, someone who has lost their hearing may stop reading, someone who has nerve damage in the hand may stop taking long walks or hiking. They might give up going out with friends altogether, no church, no dates, no meetings with friends, no movies out, no shopping.
Acceptance is the final stage, but it does not look like perfect happiness or a return to normal. It is a change in a person’s understanding of their identity which incorporates the disability and does not tend toward unhealthy coping behaviours such as drinking too much, self-medicating, isolation, et cetera. A renewed interest in old activities, trying new ones, acknowledgement of the importance of relationships, It does not mean that the person won’t experience periodic frustration over discovering new limitations or other problematic experiences. It does mean that they have begun to seek to thrive again rather than just surviving.
Grief over any loss is not linear. The stages overlap double back on each other. Acquiring a new disability, be it the first or one in a series, is a loss worthy of grief. It is a dramatic change in physical life as well as a person’s comprehension of his own identity. Time and respect are essential ingredients to helping this change take place in a healthy way. Grief is no something that should be managed but experienced. An acquired disability, however apparently insignificant, is an experience that changes a person in ways that someone who has no disability cannot understand. But that does not mean an able-bodied person can’t help, because able-bodied people have experiences of loss, too. The loss of a person has, for millennia, been compared in poetry to the loss of a limb. The loss of vision has been compared to the loss of vocation, house, land, or some other change in one’s future plans. There is a reason these metaphors exist; if you lose a leg, don’t tell your friend he can’t help you because he has both his legs. Tell him to wait because you’re not ready yet. Then, when you are, let him tell you what he has lost, and how he learned to live with it. It might not change your life right that instant, but as I learned as a child puttering around in the kitchen, brownies require more than one ingredient, and then they take time to become what you need them to be. Advice might need time to percolate before it becomes truly helpful.
If you’re able-bodied, don’t assume you can’t do anything to help simply because you aren’t disabled. Just because your experience isn’t exactly the same doesn’t mean it isn’t valid, or relevant. Don’t withdraw because you feel awkward. Don’t withdraw because you don’t know what to do. Give space if you’re asked to, for a time, but don’t back off because you doubt yourself or because someone tries to make you ashamed that you haven’t suffered in the same way. It’s not uncommon for a newly disabled person to lash out at the able-bodied around them, and while you shouldn’t let that turn into a grudge, remember that their opinion of your experiences is not, by dint of “greater suffering,” accurate. Losses should never be compared for equivalency or hierarchy. There is no way to do this accurately, and so it should not be done at all. It is unhelpful, and frequently harmful. Comparing one person’s pain to another inevitably leads to devaluing one person’s experience, and this is just plain wrong. It should never be done.
You may have noticed that I spend a certain amount of time targeting content to able-bodied people around the disabled as well as the disabled, and not just explaining the disabled experience to the able-bodied. I write about how living with or being friends with a disabled person can affect an able-bodied person, too. Not as much as I write about being disabled, because I understand that a bit more personally than the other, but I make an effort to give some column inches to the able-bodied members of society in relationship with the disabled because their experiences directly affect those of the disabled, and vice versa. It is a necessarily bidirectional relationship – just like every other kind of relationship between people of different natures. Man and woman, black and white, married and single, child and adult, teacher and student, captain and seaman, republican and democrat, Christian and Muslim, able-bodied and disabled. Each human’s experience directly affects that of the other person. Variables between human and human may affect the nature of these impacts, but they do not give us grounds food discounting anyone’s experience. Acknowledging and addressing these experiences is crucial for developing clearer communication, the building block of respect.
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