Tag Archives: Grief

Age Is But a Number?

Age is but a number, we so often hear. There are many, usually older people who say they never grew beyond age twenty-nine (or whatever age they like the most). Some people even say they remain children at heart.

I can relate to this, and yet I can’t. I can relate in the sense that I strongly embrace my inner children and teens and the fewer and fewer selves who are older than me. Right now, only my crafty self identifies as older than my chronological age.

Yet I am also very much aware that certain developmental expectations are tied to certain ages. I was made aware before I was nine-years-old that, by age eighteen, I’d be leaving the house. My father jokes that the family cat should earn his high school diploma if he ever turns nineteen. The cat is only thirteen, but you get the idea. Even cats need to conform to developmental milestones, so people certainly.

Of course, in the privacy of my own room or even with my husband present, I can be childish all I want. I for example bought a Barbie doll when one of my inner children was particularly active. Nothing’s wrong with that. On the other hand, the only reason I can go on forums that are commonly visited by teens, is that I’m female. Had I been male, I would’ve been seen as a pedophile. (For clarity’s sake: I don’t go on forums that have a clear age limit or ever lie about my age, and I have absolutely no intention of exploiting anyone.)

My age is not only significant in highlighting the inappropriateness of my embracing childlike roles, but also in making clear that I’m missing out on adult milestones. I never spent much time in college, let alone graduating it, though I’m hardly technically a yooung adult anymore. I never held a job, even a summer job. I am not pregnant, let alone a mother. I hardly ever lived independently, which even on sites for people with autism is seen as a rite of passage into adulthood.

I have written about many of these issues before. I grieve the loss of my child identity (and an inner child is no excuse). I also grieve having missed out on adult milestones and likely missing out on even more as time goes by. Age is but a number, but you can’t just act whatever age you feel, at least not in public. That’s with good reason, of course, but it is still somewhat hard to deal with sometimes.

mumturnedmom

Empathy and Expressing Emotions

In chapter three of the book Look Me in the Eye, John Elder Robison talks about empathy and the expression of emotion. He describes a situation in which an acquaintance informs him tht someone he doesn’t know has died. He smiles, being glad that he and his own family wouldn’t die in the same way and are safe for now. The acquintance responds furiously, because why would he smile at someone else’s death? Robison is regularly accused of psychopathy for similar lack of empathy. Then again, he has strong emotional reactions to soomething happening to his own family.

I can relate to what Robison describes, only to an even greater extent. He describes the thoughts he has when there’s a plane crash in Uzbekistan, as rational empathy: he’s aware that it’s sad that people are killed and knows that the victims’ families are grieving, but it doesn’t affect him personally. On the other hand, when his father had been in an accident, he was anxious and nervous and did care on a deeper emotional level. Then again, when his mother’s car was on fire, he immediately went to fix it.

These are three different kinds of responses: rational empathy with no emotional reaction, emotional empathy as in feeling personally touched, and emotional empathy with the urge to fix someone’s problems.

I for one don’t often experience a strong emotional response when something “big” happens. When my maternal grandfather had a brain bleed in 1995, I was worried because I’d had one myself. I didn’t realize that his brain bleed was very different, and I didn’t particularly feel any emotion when he died five days later. I did feel the need to care for my mother, who ran towards me for comfort at the funeral. This lack of actual emotional empathy was amplified when my maternal grandmother, to whom I had no emoitonal connection, died in 2007. I was in an emotional crisis two days before her death and called my parents, stammering only “I, I.” My father was extremely pissed, saying: “It isn’t about you. Your grandmother is dying don’t you know!” A few months later, I remember talking to my mother and, when she referred to “grandma”, asking which one./P>

In this sense, I’m more self-centered, possibly even selfish, than Robison. I honestly have never had an emotional response to someone dying. That is, I do sometimes feel touched when I realize people have passed away, but this seems unrelated to the events of their deaths. An online acquaintance died sometime in 2013, and I still have moments where my inner children are sad that they can’t talk to hers anymore. Then again, the emotional response is not strong.

It isn’t, in my opinion, a psychopathic tendency that drives me not to be touched by people’s deaths. I do feel sadness when other people are sad, even if it’s for a relatively minor reason. Rather, it seems to be that I’m captured by details more than by the bigger picture of someone having died. For example, when a fellow patient told us that he had been diagnosed with terminal cancer in late 2007, I smiled at the funny spin on a nurse’s name he made rather than reacting emotionally to his diagnosis.

The intersection of autism and borderline personality disorder, which is essentially an attachment disorder, is interesting here. It is probably an autistic tendency to be captured more by the details of an event than the bigger picture, as in the laughing at a pun when being informed someone has cancer. Then again, I do have strange attachments sometimes. I should technically care more about my grandma’s death than about an online friend kicking me off her mailing list, but the reaction was reversed. Is this selfishness? It could be, but then again, I too have strong emotional reactions to other people’s sadness, sometimes if they’re people I hardly know.

Grief

A few days ago, I read a post on grief as it applies to parents of special needs children. I am a disabled person myself, not a parent, but I can relate to a lot of what is written in this post.

Having been born with most of my disabilities, I didn’t have to face the sudden loss of a normal life, as people with acquired disabilities do. I did have to face the loss of the remaining sight I had growing up, and this has been tough, but I’ve never been fully sighted. I’ve also never been non-autistic, but in this light, I can relate to the issues faced by parents getting a new diagnosis for their child, since I wasn’t diagnosed till adulthood.

Grief never really ends. You can not feel it for a while, but something can always bring you back to the grieving place. For example, I thought I’d accepted my blindness after I had lost my last bit of vision when I was seventeen. I grieved this loss for a while, but then I picked up the pieces again and thought I was fine. But I wasn’t. When, in 2013, I had surgery that could’ve restored my vision but didn’t, I was brought back to the grieving place all over again. I knew this could happen, as I knew the results of surgery were uncertain, but still, it was tough.

Sometimes they’re the bigger life events that take you back to the grieving place. Sometimes, it’s an anniversary or special event. For example, I’m taken back to the grieving place now that it’s high school graduation time. I did graduate high school, but never succeeded beyond that and never had a good high school experience anyway. I also grieve when my relatives are talking about their college endeavors, because I realize I’ll likely never even get close to finishing college.

Sometimes, they’re the tiny nuisances of life that make me grieve. The Internet is becoming more and more visually-oriented, and this makes it tougher for me to get by. When I see a great crafting idea but can’t seem to reproduce it because I can’t see the pictures, I grieve. When I join a blogging community and 99% of the members are Moms, I grieve. And as for real life, when the weather is beautiful outside but I can’t go for a walk because the staff don’t have time to accompany me, I grieve.

Some of my grief involves current inabilities, like the inability to go for a walk whenever I want to or the inability to see pictures. Some grief involves the loss of dreams, like the dreams of a college degree or a child. Some grief involves the loss of freedom and independence. Grief, in short, comes in many forms and shapes. How to deal with it? I wish I knew.

The Five Stages of Grief in the Recovery Process from Binge Eating

When browsing blogs on mental health on Mumsnet, I came across a blog on recoveyr form alcoholism. While there, I found a post on the five stages of grief in substance abuse. You are probably familiar with Elisabeth Küber-Ross’ five stages of grief in bereavement. These same stages apply to some extent to those recovering from an addiction:


  • Denial: people feel that they do not have a problem concerning alcohol or substances. Even if they do feel as if they might have a small problem, they believe that they have complete control over the situation and can stop drinking or doing drugs whenever they want.

  • Anger at the fact that the addict has an addiction or at the fact that they can no longer use alcohol or drugs.

  • Bargaining: the stage where people are trying to convince themselves or others that they will stop substance abuse in order to get out of trouble or to gain something.

  • Depression: sadness and hopelessness, which usually happen during the withdrawal process from alcohol or drugs.

  • Acceptance, not merely as in admitting you have a problem with alcohol or drugs. Acceptance involves actively resolving the addictioon.

I do not have an alcohol or drug problem, but I do exhibit disordered eating. I wonder to what extent these stages of grief apply to the recovery process from eating disorders, in my case mostly binge eating. Denial is certainly common in individuals with all types of disordered eating. I for one was in the stage of denial up until quite recently. This is not merely not being aware of the problem, like I was in early adolescence. Rather, from my teens on, I did realize to some extent that my eating habits weren’t normal. I remember one day buying five candy bars at once and eating them all in one go. When my classmates pointed out that this was outrageous, I shifted from lack of awareness of my eating disorder into denial.

As I said, I stayed in denial for years. I continued buying sausage rolls for lunch every single day until the end of high school, then at blindness rehab ate candy and chips everyday. I gained rougly ten pounds in those four months at blindness rehab, thereby reaching the upper limit of a healthy BMI.

It took several more years before I moved into the stage of anger. By 2008, I was convinced I would die young, and my unhealthy eating habits were one reason for this. I hated myself and my body, yet didn’t stop eating unhealthy amounts of candy. If anything changed at all, I binged more.

I don’t know how I maintained a relatively healthy weight until 2012, but I did. I did start purging in 2011, which can be seen as either a response to anger or a form of bargaining. After all, bargaining can also be seen as trying to reduce the (effects of the) addiction while not completely trying to abandon it.

I reached overweight status in 2012, then obese a few months ago. I started going to a dietician in 2012, then quit going again, went back in the fall of 2013, quit again, and recently started going again. I am still at the stage of bargaining regarding my disordered eating. When told I just need to stop buying candy, I object. Instead, I want to lessen my candy consumption, keep it under control. Yet isn’t the whole point of an addiction not the substance, but the lack of control? I know that one difference between food and alcohol or drugs is that you can’t completely abandon food, and my dietician said that getting fruit or veggies within easy reach as a substitute for candy, is unlikely to work. After all, I’m going to keep the idea that food is an easy way out of emotional stress.

Time Heals All Wounds?

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” – Rose Kennedy

As people who have gone throgh something traumatic, we often wonder when the pain will be gone. We wonder how long the grieving process takes. I wondered this when being confronted with the reality of my total blindness last year. When will I finally accept that there is no way, save for technological advancements that might come in the future, that I will be able to see again?

Looking at this quote, I realize that the trauma of my having gone blind,a nd all the other traums I survived, will never not have happened, and the wounds they caused in my mind and soul will remain. The mind will create scar tissue that protects the wounds from being torn open over and over again, but the wounds are still there. Treatment for PTSD is not aimed at making the traumatic memories go away – well, I’ve heard of some medications that could in the future do this, but whether that’s ethical , is another topic entirely. PTSD treatment is focused on restructuring the person’s memory so that the emotional burden is lessened. This is comparable to creating mental scar tissue. And the thing with scars is, they itch sometimes, reminding us of the wounds that are underneath them.

A person may have seemingly fully processed their trauma. I thought I had processed the feelings surrounding my blindness in 1999, when I moved to a mainstream school and my tiny bit of vision was insignificant. Then, in 2004, I lost that tiny bit of vision and was confronted with the reality tht the scars from the original trauma of blindness were still there. I learned to ignore my feelings with the help of a rather pragmatic psychologist, herself blind from birth. I thought I had created mental scar tissue, but I hadn’t or it was too thin. The wound kept being torn open, and at last I took a different road by asking to be referred to al ophthalmologist to find out if any sight-restoring treatment was still possible. I had surgery in September, but it was unsuccessful. Now, I’m trying to build another layer of scar tissue, but I realize now, the wound will remain.

This does not mean recovering from PTSD or other post-traumatic symptoms is not worth it. It is rather useful to be able to function well in spite of trauma. I also know that scars can make you stronger, ie. post-traumatic growth. This, however, does not mean the trauma is gone. It means we’ve moved on with our lives in spite of it.

Three Months Since My Eye Surgery

Today it’s exactly three months since my eye surgery. I’m not sure what to think of it, given that it failed in all respects. That is, it did give me clarity about my prognosis, ie. total blindness for the rest of my life, but I’m not sure I’m adjusting ot this well. It constatly strikes me that I don’t really miss stuff that comes naturally to the sighted, like reading or independent mobility, but I do miss stuff that came naturally to me. I don’t wish to become sighted, and this is not even because it’s unrealistic. Becoming a low partial again is equally unrealistic now, and I do grieve that.

About eight years ago, I drafted a few responses to Robert Leslie Newman’s Thought Provokers, which were story-based discussion topics circulating on blindness E-mail lists in the late 1990s and early 2000s. One of the stories was about sight restoration. I just thought of this.

When I was twelve in 1998, my father came up to me with some new research he’d heard about that would allow blind people who had previously had some sight, to see through a computer chip or something like that. They were testing the thing with sighted people at the time and planned on testing it on blind people by about 2005, he said. “So when you’re in college, you might be a participant for the research,” he said. Not only did I not get into college by 2005, but his ideas were likely totally off-base. I have been severely visually impaired my entire life, in 1998 had some useable vision and now have none, and those equipments would most likely not work for my eye condition, since many require a retina to be attached to the back of the eye. At that time, I didn’t think about the research much. I had recently lost some of my vision and was scared of losing more and all I thought was: “By 2005, I won’t be totally blind.” When I originally wrote this comment, I said I wasn’t, but realistically speaking, I was.

I don’t have all the facts, but it seems to me that in 1997 and 1998, there was some hype about the possibility of blind people getting their sight back. I know about blind people like Stevie Wonder wanting to see for a short while, and I think he even had surgery so he might see for a few minutes (I don’t understand the technicalities) a few years back, but I never quite wished that for myself. In a way, this is strange, since I used to be about as poorly adjusted to my blindness as could be, given my situation. However, I’m realistic and I know that artificial vision doesn’t work for me at the moment, and vision for a short while would be useless.

As I looked for the above comment, I came across several other drafts of responses to Thought Provokers. One was about which would be easier: being born blind or losing your sight later in life. Another was about whether losing your sight slowly or fast would be easier. I talked in these posts about grieving the sihgt I had, not the sight I never had. This may seem odd, but when thinking aobut vision loss, I always miss seeing colors and some pictures. I wish, for example, that I could use Pinterest. Oh wait, I never had that ability and if Pinterest had existed in 1998, I wouldn’t have been able to use it. (I remember having tried to use a mouse but failed.) I guess after all what I miss are the things I could enjoy with viiion. I don’t miss reading print because I’m pretty proficient in braille, and I never cared much for independent travel so I don’t miss that either. What I did care for, and still do, are crafts, pictures and colors. Especially colors, and these can’t be repplicated non-visually.

Stages of Adjustment to Blindness

Today on the Psych Central blog, I found an article on coping with chronic illness. According to Donna White, the author of the post, people who are facing a chronic illness go through the five stages of grief populated by Elisabeht Kübler-Ross as occurring in bereavement. These stages are denial, anger, bargaining, depression and acceptance. This post inspired me to pull out Dean Tuttle’s 1996 book Self-Esteem and Adjusting with Blindness. He describes not five but seven stages of adjustment:

  1. Physical or social trauma. This is a situation or circumstance the awareness of which brings about severe anxiety, discomfort and/or turmoil. In blind people, this may be the onset of blindness or vision loss (for those losing their sight later in life), becoming aware of one’s blindness (for the congenitally blind), or the knowledge of impending vision loss (for those who know they will lose their sight at some point before actual onset of blindness).
  2. Shock and denial. This involves mental numbing, including feelings of detachment or unreality, as well as the cognitions involving denial. Denial can be partial or full.
  3. Mourning and withdrawal. This stage happens when people become more aware of the reality of their situation and the psychological defense mechanism of denial decreases. Characteristics of mourning include self-pity and a sense of helplessness. People in this stage often withdraw from their physical or social environment. Hostility may also be part of the mourning phase.
  4. Succumbing and depression. This phase involves a gradual awareness of more specific consequences of vision loss. When these (real or perceived) consequences exceed a person’s ability to cope, they may fall into depression. The succumbing phase is characterized by negativism and pessimism.
  5. Reassessment and reaffirmation. This phase involves the re-evaluation of one’s situation. Anger, depression and self-pity begin to recede and people re-examine the meaning of their life, their values and beliefs and habitual patterns of behavior.
  6. Coping and mobilization. In this stage, individuals manage the demands of their social and physical environment and direct their energy towards the tasks of everyday life.
  7. Self-acceptance and self-esteem. Having a positive self-image is the last stage in adjustment. Accepting one’s blindness is a prerequisite for this. However, a positive self-image is far mroe than accepting blindness. It involves the realization that one is a valuable person. This means confronting one’s beliefs about oneself and one’s blindness, and challenging negative ideas about oneself.
I was unable to see where bargaining fits into the seven-stage model. Bargainign is where I believe I’ve been stuck for years, although I may confuse bargaining with partial denial.

In 2004 and 2005, when an online friend had sent me Tuttle’s book, I had done a series on my old blog on adjustment with my vision loss and actually the reality of finally having become totally blind. I guess in the next few weeks, I will revisit these posts. I realize I’m actually back where I was in 2004, realizing I’ve become totally blind and (now truly) there is no way this can be fixed.