Grief and Chronic Illness

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

Multiple Sclerosis: A Quick Summary of Symptomology

Multiple Sclerosis is an autoimmune disorder that causes the body to attack myelin, which protects nerve fibers in the central nervous system, which causes scarring known as lesions in the brain and spine. As the myelin deteriorates it is akin to having wiring without insulation. Signals get crossed and confused, causing all manner of incorrect information to be transmitted to the rest of the body which manifests in many different ways. It can cause neuralgia (extreme pain in the nerve pathways), paresthesia (feelings of tingling, skin crawling, painful stinging like multiple bug bites, or pins and needles like a limb has fallen asleep), allodynia (pain or discomfort to touch that is non-noxious or not harmful such as clothing rubbing against the skin), muscle spasms, muscle spasticity (hard, painful contractions of the muscles that will not relax or release), as well as other debilitating symptoms such as optic neuritis (swelling of the optic nerves which can be extremely painful, and can cause vision changes such as double vision, cloudy vision, light sensitivity, color changes, and even temporary or permanent blindness), and temporary or permanent loss of motor control or muscle function anywhere in the body. This includes the heart and vascular system, and diaphragm, lungs and respiratory system. In addition, MS flares ups, or “exacerbations” cause inflammation in the brain which, over time, lead to structural brain changes, the most common of which is shrinkage. The brain literally shrinks, and many of the parts of the brain that are responsible for regulating such actions as sleep, appetite and mood no longer function at full capacity, if at all. Many people with MS suffer from mood disorders and sleep disorders that are not easily treated by traditional medications.
The most common symptoms of MS are fatigue (and this is not just how you feel tired after working a 10 hour shift, it’s being so tired even after sleeping 10 hours that you can barely stay awake, barely get out of bed to get food or use the bathroom, and no matter how much you nap throughout the day the fatigue persists), loss of balance and vertigo (which also tends to cause nausea and a lot of stumbling and falling down), and what is known as “brain fog” or “cog fog”, which is a cognitive disruption, an inability to think clearly and is often accompanied by confusion, dissociation, slow reaction times (both physically and mentally) and disorientation. Often the combination of these common symptoms, the fatigue, loss of balance and brain fog, tend to cause one to appear drunk, which is very frustrating for many people with MS. People are also often accused of laziness due to their fatigue, are treated as if they’re mentally challenged, and many physicians will insist that these symptoms, especially changes in mood, fatigue and sleep disturbance, have a psychological root cause, rather than a physical one, and will continue to refer them back to a psych prescriber. These issues are both barriers to treatment, and barriers to understanding by the person’s friends and family.
What must be understood is that every person’s MS manifests differently and at different rates, and there a 4 types of MS, some types generally more debilitating than others.
So if you’ve ever seen or heard of someone with MS who is perhaps very high functioning, then you encounter another person with MS who is less so, please do not compare them, or tell the one person that the other person you know can still work or exercise or go out dancing or etc and that if they only TRIED they’d feel better, because one person may be able to do these things while another cannot.
Educate yourself. MS is sadly a very common, and very debilitating disease, but it’s also very poorly understood. Learn about each new person’s struggles and support them in whatever way help THEM, not by comparing them to others, but by learning what the individual can and cannot do, and assisting them in whatever way might benefit their situation the most, even if all you’re doing is providing a sympathetic ear.
None of us asked for this disease, and if given the choice, we all would trade to get back our old lives in a heartbeat. We’re not lazy, we’re not moping around, we’re not hamming it up, we’re sick. Imagine how you would feel if you had lesions in your brain that caused even one of these symptoms to occur all day every day, and decide what your response to that situation might be before passing judgement on anyone else. All we’re asking is a little understanding and empathy.

Anger

I was bullied endlessly as a kid, at school, in my neighborhood, and particularly at home. The household I grew up in was brutal, chaotic, and frightening. The smallest issue, that may or may not have been my fault (one of my parents had a rough day, they were angry at my other siblings and so were mad at “the kids” in general, etc), any little thing could at the least, earn a tongue lashing and at the worst, a beat down. But, sometimes the tongue lashings were worse than the beatings. You can only hear how worthless you are in so many ways for so long before it starts to wear on you. I was an EXTREMELY anxious child, so much so that my interactions with other children were tense and stunted. I cried easily, was very quiet, kept my head down and tried to be invisible. Each day of school, with its competitive curricular nature, brought fresh horrors, as I often easily surpassed my classmates and was the center of attention much to my extreme dissatisfaction. I never asked to be put in that position, and hated the stares of my classmates, the weird girl who rarely talked, always knew the answers when called on, and beat everyone at every BS competition put into place that was meant to give children incentive to excel, but did nothing but torment me as I never had to try to win these competitions, won them anyway, was rewarded for my lack of effort by the teachers and administration and taunted endlessly by my peers for their feelings of injustice that they never had a chance. Through most of this, outwardly I was quiet and anxious, but inside was seething with anger and jealousy. While the other children wanted my intelligence, I wanted the things that many of them had. I wanted their healthy families, nice clothes, and most of all, their easy going nature and ability to socialize with each other and make friends as if it was such a simple thing to do. I struggled to make conversation without being bound by fear and anxiety.
By my teen years much of the anxiety and self-consciousness had lessened, but the anger remained, and for many years after I harbored an unspoken hatred toward my parents for bringing me into the world when they were clearly so woefully unprepared, both financially and emotionally, to raise so many children. As a teenager when I still lived at home I played de facto parent to my brothers while my parents worked and my mom was too stressed to handle the responsibility. As I was preparing to leave for college she lectured me that it’d be best that I stay home and go to community college for a few years then maybe go on to a university in town because I wasn’t smart enough or strong enough to make it through a major university, and as I was going to the same school as my sister (her favorite child by far) I would only drag my sister down with me, and don’t even think she was going to take out a loan or help me financially in any way because she didn’t approve of or condone my decision! I knew she was trying to keep me home to help her, but she didn’t ask that. As with all things in my house then it was strongarm, bullying and manipulation tactics. Still, it hurt, and it still kind of does. I told her I had never asked her permission, never asked her for money, and was going regardless of whether she wanted me to go. I was just so angry for so long! So angry my head would hurt and I’d clench my jaw so tight my teeth ached. I just had such strong hatred and disdain toward pretty much everyone and everything and a giant chip on my shoulder.
But…over the years I thought about my parents and their upbringing. How my dad used to beat us but he’d always present this caveat that it was nothing like what his father did to him and his siblings, and he wasn’t kidding. His father was an angry drunk who took “head of household” very seriously. He ruled with an iron fist. My mom sometimes would describe the absolutely horrifying things her father did to her and her brother, and how they had to flee like criminals to escape him. I realized, my parents did the best by us that they could. No, it wasn’t good, or proper, or healthy, but they really tried not to repeat their own parents’ mistakes. As I was getting older I thought of the mistakes I’d made, and was making, and how I was reaching the age my mom was when she had her first child, and realized how young and ignorant I still felt, how much I still had to learn. As if a fog blown away by a strong gust of wind, my anger at them, and at the world, quickly and easily dissipated. I didn’t need it anymore. A much more phlegmatic me emerged. More calm and easygoing.
When I was diagnosed with MS I felt like I should be angry at SOMEthing. My temper always still quietly lurks under the surface. I can feel it there like a giant sea serpent, circling under the waters, stirring them up very deep, occasionally rearing its ugly head then dipping back beneath the calm waters like it never existed. My fits of temper are always a shocking and frightening thing to anyone who witnesses them, so unexpected, so out of my usual character. But with this, I wasn’t angry. A bit sad, maybe even felt a bit defeated, but not angry. My ever logical mind was already researching the disorder, planning my next move, trying to figure out how to proceed and what was best for each new circumstance.
It’s so unpredictable, and I often feel at the end of my rope, frustrated, saddened, aggrieved, tired…but not angry. I’m glad that, at least, I was able to outgrow this particular knee-jerk reaction. It did take a good deal of soul searching and coming to terms with my life as a child, but I was able to learn, and I hold out hope that I’ll be able to, in time, overcome my many other shortcomings and continue to grow to be a halfway stable adult.

A Ghost of Regret

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…