The Fight is Over...

Neal passed away June 30, 2014. And just when I had vowed to go into social isolation with him. Perhaps I was not meant to. Who knows. But I am immobilized anyway with sorrow, the depths of which I had never imagined. Yes. I don't know quite how to do this - be a grieving mother. But I presume I will perfect it in time. I presume, too, that the world will go on (it has, after all) and that any marks we might have made or hoped to make won't matter. (Isn't it vain to think otherwise?) There will always remain with me the question of whether his passing was self-induced in some way. I think maybe, in part at least. And who could blame him?  I will say that I am also happy for him. Yes. For there is no more struggle. He is finally free.

As for me, I have learned that sorrow is not on a continuous loop. Grief may be, and time even, but sorrow is linear, a downfall, straight into an abyss of unfeeling.

I think that Neal, if he could have, would have written this poem (he certainly lived it).

A Dialogue between the Soul and the Body

By Andrew Marvell BY

SOUL

O who shall, from this dungeon, raise

A soul enslav’d so many ways?

With bolts of bones, that fetter’d stands

In feet, and manacled in hands;

Here blinded with an eye, and there

Deaf with the drumming of an ear;

A soul hung up, as ’twere, in chains

Of nerves, and arteries, and veins;

Tortur’d, besides each other part,

In a vain head, and double heart.

BODY

O who shall me deliver whole

From bonds of this tyrannic soul?

Which, stretch’d upright, impales me so

That mine own precipice I go;

And warms and moves this needless frame,

(A fever could but do the same)

And, wanting where its spite to try,

Has made me live to let me die.

A body that could never rest,

Since this ill spirit it possest.

SOUL

What magic could me thus confine

Within another’s grief to pine?

Where whatsoever it complain,

I feel, that cannot feel, the pain;

And all my care itself employs;

That to preserve which me destroys;

Constrain’d not only to endure

Diseases, but, what’s worse, the cure;

And ready oft the port to gain,

Am shipwreck’d into health again.

BODY

But physic yet could never reach

The maladies thou me dost teach;

Whom first the cramp of hope does tear,

And then the palsy shakes of fear;

The pestilence of love does heat,

Or hatred’s hidden ulcer eat;

Joy’s cheerful madness does perplex,

Or sorrow’s other madness vex;

Which knowledge forces me to know,

And memory will not forego.

What but a soul could have the wit

To build me up for sin so fit?

So architects do square and hew

Green trees that in the forest grew.

Why I Left Academia and Went Fishing

Given that I have been unable to find a full-time faculty position here in California, as I had hoped and as I have studied and prepared for, I have finally done what a small part of me knew I needed to just do. I have thrown in the towel and decided to go fishing instead. Yes, that's right. Fishing. Me, of all people. My last interview at a local university was fantastic, but it came down to me and another candidate...the other candidate got the job. I've applied for dozens, and frankly, I'm tired of it. I could be bitter, but I'm not. In all sincerity, I feel like I always end up where I am supposed to be. So, I'm teaching part-time still at an online university and making decent money doing so. I still get the joy of teaching, which I very much love. But all that research I had hoped to do...well, I'm just going to have to let that go. Instead of making some huge impact in the field, I'm going to make meaningful, small differences where opportunities present themselves for me to do so. Starting with my online students (a population I adore and who keep me connected), and above all else, my family.

My wife Angela works a fulfilling job and my daughter, Jenny, is having a great summer with the neighbor kids hanging out at the pool and playing baseball in the park. But in the last post I wrote here, I think I pretty clearly summed up my son's daily life. Truth is, he needs a companion. And truth is, that companion is just going to have to be his mom. Because I work from home now, I'm here...all the time. And so is he. I've decided, finally, that I will step away from the world, the world that has continually rejected him, and join him in his isolation. And we will make the most of it! The boy LOVES fishing, but he has no one to go with of course. Me? Well, yeah, not my favorite, but I'm going to LEARN to love it, lol. So no more academia applications and interviews! We are buying new poles and we are going to plant our selves on one of these gorgeous lakes that surround our house and...fish. Something tells me it's all going to be alright and maybe even just what I needed. :)

Join a Club or Something... [the Presence of the Absence]

After some reflection on recent conversations about what my son might do to “fill his time,” I have the following thoughts to share. First, if one more person suggests to me that he should join some community activity, I’m going to just explode. Do you seriously think we have not tried? For the past 18 years, do you think we have just been sitting on our hands, swinging our feet, whistling, watching the world go by? Do you think we have chosen this isolation over better prospects of a meaningful social life? Of course not! But there is always a reason he doesn’t fit in – the language barrier, visual barriers, the need for physical abilities, the need for cognitive abilities, you name it. For those among us who have not experienced rejection, I encourage you to go look up the word. Look up “social norms” while you’re there, too. Which brings me to my second point.

Someone else told me recently that, “we all go through things in life.” Let me explain something – my son is NOT “going through something in life.”  This IS his life. On a daily basis. Yesterday when he collapsed in my arms crying, shaking uncontrollably, I cried with him. He was broken-hearted over the loss of three new “friends.” I could not, in good faith, tell him that it would get better, that this will pass. You see, that is the difference. When typically-developing teenagers cry over friendships or romantic relationships, we know it will pass. We can hold them and tell them so, even though we cry for them in the meantime. But we know it is a phase of life they go through as they struggle to find and define themselves. We understand the value and the power of these peer relationships in an adolescent’s overall development. We know they will have other opportunities to make lasting relationships as they continue to learn how to develop them and as they begin to identify who they want their closest friends to be. My son doesn’t have choices like that. And he never will. He takes what he can get. Period. The end. I can’t hold him and tell him it will pass, because in his 18 years of life so far there is zero evidence of that being true. And it ain’t looking any better.

That said, I am doubly saddened when I think of what he has to offer if the world would have him.  He is brave beyond all measure. He is determined. He is inquisitive. He has a great sense of humor. He never gives up. What he could do if only he were allowed to try. And by try, I mean meaningfully so.

Take a moment, if you will, and imagine yourself as a teenager again. Imagine attending the same school that the neighbors’ kids attend, going to football games (maybe even playing on a team), dating cheerleaders, starring in the school play, singing in the chorus, skipping school to head to the lake for the day with your buddies. Imagine working in a job you want to have, a local pizza joint maybe, because your friends are working there too. Getting excited about graduation, the prom, applying to colleges, dreaming of the life you want for yourself – big things! Right?

Now imagine all that was taken away before you ever got the chance to even experience it, or worse yet, taken away while you watch all of your peers get to experience it just fine. Instead you are bussed to a school an hour or more away. You don’t know the neighbor kids. They can’t talk to you because you speak a different language, and they think you’re weird anyway. Your prom “date” is one of the professionals hired to work with you. You want to work, but no one will hire you to do anything you want to do unless you work in a place which is supported by the local community resource center for individuals with disabilities (think assembly lines – which isn’t actually viable because the bone structure in your wrists doesn’t allow them to rotate properly). You want to go to college, but… lol, never mind. Hell, you just want to go to the store for a cold soda on a hot summer afternoon, but it’s a bit of a walk and of course you can’t drive, never will. Can’t ride a bike either because of balance issues. And well, it’s very hot outside, and your heart condition can’t take the stress of that walk. Oh, and you don’t know how to count money so you have to trust you won’t get cheated, and the clerks behind the counter watch you like you’re trying to steal something, or they call 911 and report an apparently lost and disoriented teenager (who is neither lost or disoriented). Then the cops call your mom, and you’re humiliated in front of everyone in line behind you. And then you soil yourself.

But hey, you know what you should really do? Take everyone’s advice, stop whining, and join a club or something. “We all go through things in life.” Good luck with that…

[And this is what is known as the presence of the absence. It’s when that which we are missing is blatantly obvious every single day. Not sometimes – but every day. Pearl Buck once wrote of her daughter with cognitive disabilities, “I miss eternally the person she cannot be.” It’s a living loss for which we are not permitted the social spaces to grieve. It is the ever-present absence.]

P.S. I'm not whining here. Just trying to help people understand the reality we live with. But those statements, however well-intended, make me feel like I must look like a terrible mom to them or I'm not doing my job because I'm not getting him "more involved in things." And it's just not realistic. 

An epiphany?

Tonight two young boys have helped me realize that everything I have hoped for in these past 18 years is ridiculously out of my reach and I should just quit. Quitting is something I have dreamed about for a long time. To just step quietly away, go to sleep, let the chips fall where they may. But then there is that agonizing fear that the chips will fall into the pits of hell and when I wake up and realize I could have done something about that, I will regret it. So for that reason, I have not quit... not yet. But there's still time. Perhaps if I sleep, the chips will fall just where they are supposed to, without all of my nagging and petty interference. It's certainly something to think about.

I've also learned chronic sorrow isn't nearly as common as I thought. We, in particular, just suck at most things, therefore we are isolated and stuck. No wonder this is all so unpopular. I have said many times that the world doesn't want to hear about it...and I have railed against that, insisting they must! But no. .really. Why must they? Empathy can't be taught, after all.

Well hell, I don't want to do this anymore anyway. And trying to make a career out of it was among the stupidest things I've done. And though I can't get much of my life back, I will still gladly take any suggestions for an entirely new mid-life change of occupation! Hate myself over and over and over for not staying a bartender. I could have my own saloon by now, and my son could be happily working there getting his occasional drink on.

She falls. You leap.

She falls. You leap.

The Difference between Sorrow and Depression (in case you were curious - I actually have more factual research to share on the differences, but I thought this was a beautiful anecdote and so wanted to share it.)

“Another experiential difference between sorrow and depression is brought home in an anecdote concerning the writer James Joyce, and his daughter, Lucia, who was eventually diagnosed with schizophrenia. Although apparently apocryphal, the vignette makes an important existential distinction. Supposedly Joyce had brought Lucia to the eminent psychoanalyst, Dr. Carl Jung. Joyce was perplexed, regarding the difference between his own idiosyncratic thinking and the convoluted thought processes of his daughter. Jung is said to have replied: "She falls. You leap."

Indeed, we might say that depression is to sorrow as falling is to leaping. Put another way: we are overtaken by depression, but give ourselves over to sorrow. There is, in short, an intentional dimension to sorrow. The priest Francisco Fernández Carvajal tells us that, "...like love, sorrow is an act of the will, not a feeling."

(Reference: Pies, R. (2008). The anatomy of sorrow: A spiritual, phenomenological, and neurological perspective. Philosophy, Ethics, and Humanities in Medicine, 3(17). doi:10.1186/1747-5341-3-17)

Movin' ...and Shakin'

Again, it's been a while since I posted here, so quite a bit to catch up on (though I'll try to summarize neatly). In late April, I made a big move from North Carolina to California. So yes, we have a new address approximately 2600 miles from where we were before. Why, you ask? Too many reasons to list, but suffice to say that, for my son, there is improved access to healthcare here. And about a week after we hit the ground in our new home state, he tested that access with emergency surgery to replace his pacemaker, a week-long hospitalization, and at least one visit per week for follow-up (and still going). Seriously. The moving truck had not even shown up yet with all our stuff. For my daughter, there is access to better education, exposure to more diversity, and equal rights for the beautiful young woman she is growing into everyday. Additionally, my partner needed to finish her last internship in clinical psychology, right here where she started years ago in Sacramento. And me? Well, I just needed to make all those above-mentioned things happen. And I did.

Now onto the "Shakin'" part of this post, right? Where to begin. First, a big move like that isn't easy. I took a leap of faith that all would be well. I maintain that faith that it still will be. But I haven't found that full-time job yet that I need so much. Not just for the money, but for my state of mind, to fulfill my sense of purpose (you remember, affecting social change, and all that?). I'm working part-time, teaching online.. and it's all-good for the moment (though there will be another post about this, I promise, lol). But when you leave your home, when you leave the only small family you have left... you shake. It's a nervous shake, and it's a bit of a "wtf am I doing???" shake. Sometimes (but certainly not always) it's an "I really need my mom" shake. But I remind myself that my mother lives only in my heart now, no matter where I am, and there is other business to attend to.

And I am not oblivious to the fact that my children shake, too. You should have seen how excited they were to pile into that car and make the cross-country road trip for their new lives in California. This, even though I promised them that it was NOT going to be Hollywood, lol. I patiently prepped them, saying, "I know you're excited now, but after we are there for a week or two, you will begin to hate me. You might hate me for about a year or even longer. But someday...someday, you will thank me." Again, I'm taking a leap of faith that they will. That all will turn out well. But NC was their home, too. They miss their friends, their family, their schools, the security of all that. "You will make new friends," I tell them.

But here's the thing... and this is what you were expecting, right? I mean, hey, it's a Chronic Sorrow blog after all. My daughter actually is making new friends. My son is not. She's developing typically. And though I still worry, like all moms do, I am consoled by the fact that this move is nothing that a million other children like her haven't gone through. She will be fine. But my son.... He has made acquaintances, who we (for a brief moment) had hoped might become friends. Yet they are all tiring of him already, as I knew that they would. I can't blame them. He is exhausting. Our attempts to enroll him in the School for the Deaf, for which he is so ready and excited, are being thwarted (though I haven't had the heart to tell him so yet as this may very well put him over the edge).  I've tried connecting him with other teens who have CHARGE on facebook, and even that has not worked. I got him hooked up with a videophone just a month ago, and already I'm receiving calls about how much he is "bothering" everyone. Other than church on Sundays, of his own freewill, and some outings here and there, he has been in a prison all summer. This is not living. And I fear now the prison he is in is getting even smaller. The social-emotional delays, I know, are the result of the lack of social opportunities throughout his entire life. Now, as he moves into young adulthood, the psychological damage of these years of isolation is becoming more and more apparent. It's absolutely - heartbreaking. To say the least.

So I could wallow, I guess ... let myself be consumed by the sadness of it all. But as research shows us, this is not what persons with chronic sorrow do. We keep moving, even when we are shaking.

Followers? ...in more ways than one.

I keep thinking that I need to advertise this blog, maybe on facebook, and acquire some followers for it. But I don't write enough, and I'm just not sure enough of what I have to contribute, I guess. Then again, I ran into this very lovely woman recently at the hospital while I was there with my son for his 7th heart surgery. She and I were taking a short break in the cafeteria and ran into each other there, started talking. She has been at the hospital with her son for a very long time, and is still there today. I know because we became facebook friends. I spoke with her briefly about the concept of chronic sorrow, gave her some research about it. I wonder if she has looked it up. Sometimes we get so bogged down with the everyday trappings of life with disabilities that it is hard to step out and seek something to help us better understand our experiences and the array of emotions related to them. After so many years, you simply think you have a handle on things. You start to feel like a pro. But, gosh, what does it mean to be a pro at this? Do we win some award? Do we get bumped up a rank in society? No, we don't. As for me, after 17 years, I feel like I'm just going through the motions.
'
One of the parents in my dissertation study said that she just doesn't feel like she cares as much to be involved as she used to. With the passing of time, she said, she has stepped back. That's how I feel, too. Like I'm just a bystander, watching this happen to me, to my son... and now to my daughter. Yes, my daughter. Finally, at age 12 she is beginning to show the effects of this incredibly predictable life we live. We went to a psychiatrist. It seems like it all boils down to her own chronic sorrow. How else should she respond? With the lack of services and supports, even family supports, where else could we be expected to be? Add to this the fact that I have no affordable insurance for her... meaning, she can't get the mental health services that she needs. Instead, I've enrolled her in a Parks and Rec Music Leadership class that is supposed to help young adolescents understand their own power, learn to experience mindfulness, and basically find their way and make a place for themselves in this world. It's the best I can do right now.

But, I swear..I lay in bed at night and question myself relentlessly. So much guilt. And then simultaneously, so much damn RESENTMENT. I know I have just become bitter. Sometimes I just feel the weight of all of this on ME. Sometimes I want to scream for others to stand up and take some responsibility, too. It isn't easy for ANY of us. And in the case of my daughter, I want to remind her that I'm not perfect either. I don't have all the answers. She has to work out some of these things for herself. Then I have to remind myself: SHE IS TWELVE! She doesn't yet have the skills to work these things out without help. She looks to me, I know, to learn how to handle things. So I have to be strong while still letting my emotions show. I fear sometimes that she sees too much bitterness, too much anger... at the system, at the world we live in. So many attributes about myself that I do NOT want her to take on. I don't want her to go into the world angry at it, suspicious of it, intimidated by it... but that's pretty much how I perceive it these days. Gone is the hopefulness of my youth. And because of that, she has no feelings of hope either. It frightens me because at least I HAD it at one time. I know what it is to feel proud, happy, energetic, engaged, curious. I fear she has never learned this, or has already lost it, and in such a prime time in her life. ... *deep sigh* finished for now....