If You Were Going Blind: What Would You Do?

What if you were fifteen years old?

A few weeks ago I received news about the son of long-time friends of mine. We were particularly close in that our sons were born only a few weeks apart, and when they were small often played together.  Over fourteen years since this photo was made (my son on the left), it was discovered that after having a generally common illness, it had settled in and had rapidly begun to consume his vision.

His parents, like any others, when learning of this situation desperately went from specialist to specialist who tried everything available (which also means in their price range) which might save their son’s sight. For the moment, it has been slowed but he is legally blind after only a few months, and it will continue to deteroriate. One hopes that medical science and technique will continue to improve so that in the future something might be done for him but…how would you deal with it?

The news rocked me to the core when I heard. And only from an outsider’s view in, even as personally close to them as I am, one might rationalize at least it’s not cancer, he will survive this. It is not life threatening, but it can mean a permanence of reduced life quality. A part of oneself is dying, with all that entails, and you can consider the physical loss of course, but the psychological? The Self: the emotions, the loss, the grief, the helpless?

There are many theories by psychologists having observing serious illness, the after-effects of debilitating accidents or loss, dying and death, which often first entails denial and anger, but which may subside into acceptance, resignation and for some, peace. The surrender to the inevitable. Nearing the end of my degree in Psychology as I am, head filled with the teachings of Adler, Jung, Frued, Maslow and so many others…through those readings I have so many concerns for him. I wonder what might help on the personal issues that arise.

On the other hand, as I have put forth to my professors on occasion and being generally non-compliant and likely irritating, sometimes we have all this “extra” knowledge which I feel is non-sensical. It’s like the doctors, therapists and some people need those theories to explain to themselves and each other what psychological processes are occuring in someone or which has prompted certain behaviors but to the individuals themselves: it is ultimately irrelevant. For thousands of years humans have dealth with what life gives them, granted, some better than others. Many did/don’t have access to such “high brow” textbooks, tomes and theories, yet they get on with life and adapt as necessary.

He was always a nice boy, rather shy, petite in stature, had a lisp and a propensity for accidents that sometimes got him teased at school, but he had an older brother who wasn’t that much bigger or older, but who would take on the bullies without a second thought so it lessened for a while until that brother went on to high school. He was the kid that, when everyone was taken turns jumping on our trampoline, would be the one that scared us all by completely flying off suddenly, landing with a thump. But being double-jointed like his mother…always escaped any serious injury to our amazement.

My son and he went to the same school location, but despite being the same age, since this friend had failed a grade, they were in 5th and 6th respectively, middle and elementary school which were in separated areas of the campus. Unfortunately, they could not be together. In this school that prided itself on being “bully free” my son was intensely bullied, even beaten and harassed within days of starting sixth grade (he’d gone to another elementary school) and eventually had to go out on medical leave. What was the issue behind all this bullying?

At that location, and in that area of Alabama anyway, you have your “white” groups and your “black” groups and when you are “in-between” it is hard to find a place or be allowed a place. My son is American Indian, his friend is Japanese and African-American. Unless you change yourself to fit in, stop being what you are, you are often not accepted. If you act “white” you can be with them. Maybe. If you act black, you could be with them. Maybe. If you just wanted to be yourself? You were alone, and alone often equaled ridicule.

This is a side point totally, but though we had similar strictures when I was in school in the area, there being even more overt acceptance for minorities, it was actually better in some ways because teachers more actively tried to help kids intergrate, interact and get along. For many reasons today that is harder or non-existent, with larger classrooms, and what I’ve felt a general downspiral of society involving manners, etc. politically sensitive gestures only extended to some, and being mixed or “other” receives a narrow view because it is obvious that invisible but still power “line” had been crossed. You haven’t kept to your kind or you were too totally different from the accepted “kinds.”

Even at twelve and thirteen, if you weren’t making sexual comments, boasting of having a girlfriend or looked in any way (in their opinion) feminine (my son had traditionally long hair) you were called “gay” and other slang, as even worse fate, especially if combined with being a minority. But my point in bringing this up, is that the boys both felt isolated, but circumstances at the time didn’t let them be together as support.

Parents have to work, and in between it you try to talk with the school to get things improved, the bullying stopped, but like the article my son and I wrote together, “They Said I Was Weak…”  the school dismissed, ignored or conveniently minimized the problem, making it out to be one of sexual ori

We spent the next year battling through my son’s PTSD after the extreme bullying he endured, out on medical leave, and then were finally granted a transfer to a school whose principal and staff were absolutely zero tolerant on bullying and didn’t delude themselves. My son had a passable year and made steps in regaining self-confidence. Though our families kept in touch, we then were in Germany for several months of 2011 until my son returned to the USA at the end of last year. He subsequently found out about his friend’s circumstances.

My son has suffered what he suffered, but sometimes it is necessary to step outside yourself to learn empathy for others which can in turn help yourself. As a parent, I’ve had the struggle, and unless you’ve been in the situation its hard to comprehend how hard it is to see your child in pain which you cannot change. To physically keep your child from committing suicide, or having found them when they tried? You want do anything and everything you can for them, besides having to deal with your own emotions, but some things you cannot teach them. Only life can do that.

I could say a million times, “It will get better” and I know it can, but I do not agree with that broad campaign or statement under the same name, because in the individual’s situation that can mean nothing when they are in active agony. It can come over as condescending and dismissive, and some have expressed they feel it shows that person doesn’t really care about them or understand what they are going through. “It will get better” is very easy to say, but extremely difficult to have someone believe, which why I don’t say it. I demonstrate by actions instead.

I could say to my son, “In reaching out to others, you might also find (or remember) that friend you’ve been searching for, that special connection.” You could say so many things of what life and experiences have taught you personally, even share your hard times, but you cannot make it real to them. You cannot make them believe or understand until some aspect of life dawn’s on them so they can appreciate it in relation to their own thoughts and struggles.

Like my own personality, which is perhaps why I’ve gone back into counseling and therapy, I’ve observed in my son that he needs and wants something to fight for. He wants to help, even if it is a momentary distraction from his own pain, it can be enough positive reinforcement to keep him wanting to do good whenever he can, but especially when he’s also hurting. He has regained this feeling of worthiness through helping his childhood friend.

J. can go to school, but like my son, has chosen to be homeschooled. As with my son, there are pro’s and con’s to this, as I believe my son needs the social knowledge interactions which his peer group can bring, even if some of it is negative, he can learn from it and apply lessons later in life. For J. it is more complex in that getting around is now an issue, besides not being able to see necessary displays or textbooks, etc. He is learning braille but…you can see the sudden difficulty yes? It is learning a new language, a way of living, of interaction even while dealing with a new disability.

It has been painful to lose friends who he used to play sports with who no longer have any time for him. Those which with he played video games, but now since he can’t see them? They don’t invite him, and don’t understand or perhaps care that he could still enjoy simply being with them. Even into adulthood there are ones who never want to feel uncomfortable, they think about themselves and their own feelings without considering other people’s. Very convenient for them, but like this sitation: hard, hard realities for this young man.

I’m told he remains cheerful, at least to the outward eye. His elder brother, his protector, is visiting family in another state for summer, leaving J. alone but if its one good thing about my son and I still being apart right now, he and this young man get to spend time together. Hopefully, they can learn from each other how to enjoy the aspects of life they can, trying not to be envious of what cannot be attained or retained: not an easy task for even a Zen master.

Courageous tories like this can really put life in perspective, and should hopefully help us each (that favorite saying of mine from an anonymous donor): “Always be kinder than necessary, you never know what someone is going through.”

Or another from Frank Herbert’s epic work, Dune, “O you who know what we suffer here, do not forget us in your prayers.”