adventures in time

All we have to decide is what to do with the time that is given to us.

Category: purpose

Survivor’s Guilt

They say coping with loss gets easier with time.

I think we just get better at hiding our feelings until most everyone else has forgotten what happened.

In the days and weeks after Matthew’s death, I was barreling through life like a man on a mission. There were things to do, arrangements to be made, matters to be settled, loose ends to tie up, mourners to comfort and… well, someone had to take charge of all of that. As I am peculiarly drawn to take charge of the uncomfortable things that others are reluctant to do, the situation was oddly comfortable to start. I set about accomplishing various tasks in a workmanlike manner, which afforded me the opportunity to separate (somewhat) my emotions from the larger situation. I wasn’t ignoring what had happened; I was just subconsciously distracting myself from the unpleasantness of it all.

In the last month or so, all that I had been distracted from has caught up with me, and not gradually. There are more mornings than not where I wake up with a desire to simply do nothing; to be ignored and left alone most of the day. I know myself well enough to know that feeling is not normal for me. Ok — it may be normal under the circumstances, but it’s not my usual posture toward the world.

Everything seems to be a trigger that reminds me what happened. At my age and station in life (and thanks in no small part to the magic of the Internet), it seems as if happy, healthy infant children — and their proud parents — are everywhere I turn. Even when I look for the words of others who have experienced a similar loss, it always seems as if they lost their second or third child, meaning they still at least have one or more living, breathing children. I get a bitter, resentful feeling when I read that bit of info. I am quietly outraged by the audacity of their greed, though I know greed has no part in their story or grief.

I have become well-acquainted with the knowledge that, less than 24 hours before he was declared dead, Matthew was alive and kicking inside his mother. He was nearly full-term and might have been safely delivered. If only I had known he was in distress; if only I had known the signs of distress — that decreased movement is in fact NOT normal late in the pregnancy term, something we were never told — I wonder if he might have been saved. Even if not, I wonder if I would have at least been able to see him move or take a breath. Just one movement that I could see with my own eyes.

Just one breath.

At some point during most days, I usually will ask myself “What’s the point of living?” Not because I have a desire to die, but because I am left to wonder what my purpose in continuing to exist is. Everything in the world seems to be in turmoil, and while much of it could be put right, it seems as if the majority of us lack the desire, will, understanding or empathy to do so.

Most days, I’m not really living anyway — I’m just surviving,

And I don’t understand why I’m doing even that.

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A New Day

Here’s a secret: I’ve felt like crap all winter.

It’s a fact that is probably best — if not only — known by my wife. While I’ve never been shy to talk about my health problems (I have carried a diagnosis of nephrotic syndrome since age 3), I generally don’t discuss the actual, present state of my health outside of my own close family and maybe a few trusted friends. Such reluctance is both a coping mechanism and a defense. As the former, it allows me to not feel as if my entire life is controlled by my illness. Regarding the latter, while I have never felt discriminated against because of my illness, I have always been somewhat fearful that I might be judged as less capable because of it. Moreover, my illness is not one that always has obvious outward manifestations, so I am especially wary that others might get the idea that I was “faking it” to gain some advantage.

After deciding to leave Arkansas and return to Massachusetts in August, 2012 (why? we’ve got a baby on the way and my wife has an incredible job working here), my condition flared up significantly. The trip from Mountain View to Melrose was particularly brutal, but I made it. Throughout the Fall, I continued to yo-yo back and forth between almost-well and full-blown relapse. Winter 2013 hasn’t been much better. However, after a few weeks of treatment following my most recent episode, I am finally beginning to feel like myself again. It’s hard to explain the difference; when I am sick, there are certain physical problems I suffer from (severe fluid retention and fatigue is perhaps the most difficult), but I find that I have difficulty with collecting and processing my thoughts, and maintaining focus. It’s as if I’m in some sort of haze, and I can’t quite put things together as quickly as when I’m myself. It’s very frustrating to feel like you exist just outside of your ability to function normally. It’s akin to trying to drive while looking through a foggy windshield; if you’re familiar with the path, you’ll most likely be fine until the window clears, but there is always a chance you could miss something important.

But the fog has cleared for me as of late, and things now have a sort of clarity that is itself unusual. Not only do I feel more like myself again, but I also have a feeling of renewed purpose. I am not only looking at old things in new ways, but I’m also thinking about new things. I will admit that I have felt directionless on several occasions for many years now, despite what some might cite as evidence to the contrary. I’ve been trying to find my way, but what I’ve really been doing is sticking to a very rigid path that, while not in itself a bad plan, didn’t provide much room for flexibility. As everyone learns, things never go the way you expect them to. As we learn that, I think we also have to be able to shift and adapt somewhat to our new circumstances. Certainly this doesn’t mean abandoning closely-held dreams or departing the path completely, but recognizing that we simply can’t control everything to the level we would like to be able.

I’ve contemplated where this unusual sense of renewed purpose arose from. I can probably attribute it to multiple factors: the impending birth of our first child; a long while spent not as “myself” while sick; a stronger relationship with my spouse and family; and finally accepting that I am an adult now. While my thoughts, opinions, and choices may not always be popular, they are made after mature reflection on the matter at hand.

I am finally beginning to truly believe in myself, and recognize that others believe in me, too. I am becoming more willing to accept the trust others choose to place in me. On top of that, I have a new little life coming in to my own soon, and he will not only believe in and trust me as well, but he will depend on me. He will need me to believe in him one day, and until that day — if nothing else — that should give me purpose.

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