Next

I’m not certain if control issues were inherited or ingrained, but my mother was the pinnacle of having things in order, and bits of her need to control all the things all the time were handed down to me, and I handed bits down to my daughter.

It isn’t always a bad thing to want to be prepared.  It isn’t always a bad thing to desire control over a situation.  As a person who felt they didn’t have autonomy and agency at many times in her history—and even in the present moment—I am a big supporter of having some control over what happens in my life.  I like to be prepared.  I like to know what is coming, whenever possible.

But I also know that life isn’t controllable.  Life isn’t boxed up neatly and organized and cleaned up and put into order.  Life is chaos.  Life is dynamic.  Life is unpredictable.  Choose your own adjective—but the point is, you cannot maintain control of all the things all the time.

For almost three years now, I’ve been living in a situation that magnifies a lack of control a thousand times.  It has not been easy for me.

It isn’t that I am just like my mother, and need all the preparations and all the order and seek them in an anxious and worried manner that cannot allow for others to see the internal chaos—the private chaos that all the preparations are meant to hide.  I also have, whether inherited or ingrained, my dad’s propensity for being laid back and letting life happen, while offering peace and calm and love to everyone around you as a counter-measure to life’s chaos.

One of my employers, many years ago, said of my dad, “Dave is the kind of man whose pants you could light on fire and he would say, ‘Hmm. It’s a bit warm in here.’”  And that was one of the best descriptions of my dad’s manner of being that I ever heard.  I’m not that chill and laid back, but I am at least, I believe, half that laid back.

But the other half.  The half from my mom.  The half that wants order and shuns chaos. That half is feeling tortured right now!

The living situation that magnifies my lack of control, and the dependence and humility and trust that not having that control forces me to develop, has, in many ways, helped me become less like my mother and more like my father.  I’ve started letting go of control.  I’ve started asking for help without shame.  I’ve started to trust in divine providence.  But the last few weeks of this living situation have brought out the control freak in the most unflattering ways.

After almost three years of waiting, I am now 25 days from my disability hearing.

25 days.

I’ve waited more than 25 months for this day.

And I am terrified, because I have no fucking clue what happens next.

The other day I emailed the paralegal that is working with my lawyer to prepare my case.  I asked him what my next steps were.  I asked him what I do now—after I dutifully went from doctor to doctor, asking if they agree that I am disabled and getting their detailed documentation on record when they did agree.

The paralegal said I do nothing.

Nothing.

Next I do nothing.

Oh. My. Fucking. God.

I am completely incapable of doing nothing with 25 days standing between me and the decision that determines how, or even if, I survive from this point forward.  I can’t do nothing while a stranger—a man I have never met—looks over all of those detailed documents and decides whether I get the assistance I need to live independently, or whether I am forced into some other sort of situation, where I don’t have the right to the freedom and independence that people who are not sick all the time take for granted.

That freedom and independence might not be granted in that courtroom.  Or maybe it will.

Either way, I don’t know what comes next.

This ominous unknown “next” is looming before me, and I am told that my response right now should be to do nothing.

I’m not doing well with that.  All the parts of me that desire control and preparation and order are screaming out in pain.  All the parts that need to know what to do and need to know how to best prepare for what is coming are feeling tortured.  I forget to breathe sometimes.  There is a tightness in my chest, on occasion, that I can’t be sure is from my current respiratory infection, because I have a suspicion that it is a sign of panic instead.

I emailed the paralegal again today.  I asked him what happens after.  What happens after I am awarded benefits?  Do I get them right away?  Do I have to wait even longer?  Does my fundraiser need to sustain me for two more months?  Eight more months?  When do I get the $21,000 that the state wrongfully withheld from me while they argued that I wasn’t “disabled enough” and could do “some unskilled work”, even though my medical records and my work history told a very different story?  On what day do I feel vindication and validation?

And what happens after if I don’t?  What happens if the judge does not offer me vindication and validation and $21,000 in back-payments?  What happens if I can’t work but the judge says I must?  What happens if I can’t hold down a “real” job for any significant length of time?  What happens when my physical and mental state deteriorate as I lose time for self-care and therapies and coping strategies that are essential to my wellbeing?  What happens when I become what I was three years ago—a bed-ridden mess of pain and mental anguish?  What then?

The part of me that needs to prepare and create order and keep things neat feels like she is being drowned.  She is choking on the unknown as she tries to remember how to breathe.  She is suffering and dying.

The part of me that is laid back and offers peace and love seeks to console her.  She is nearly inconsolable.  No amount of meditation and diaphragmatic breathing and coloring mandalas seems to quell the shaking of her frame.  So, the peace-filled part accompanies the out of control part to my desk.  Together they research and add and subtract numbers, experimenting with all the possible sums and trying to find a way through the chaos.  Trying to determine what the next stage might look like—what “next” might be.

The two parts sit together on the yoga mat, trying to clear my head of negativity and fear and shame and confusion and stress.  The two parts sit together and recount all the things for which I am grateful.  The two parts sit together on the sofa, trying to distract from the chaos by watching Netflix and becoming invested in a fiction instead of hyper-focusing on my reality.  The two parts sit together as I attempt to do nothing, and to go about life as usual—therapy, doctor visits, gym, pool, massage, yoga, meditation, food prep, cleaning, baths, walks, updating the fundraiser.  They try to help me live my life as though it were “normal”, and try to prepare for the worst while hoping for the best.

But they aren’t succeeding in any significant way.

I am stressed beyond comprehension.  I half expect to have a stroke before my court date arrives.  But then the other half reminds me that I have waited for 30 months, I can wait 25 more days.

And the decision on the 21st isn’t necessarily the thing that I fear the most.  It isn’t the thing that might make or break me.  The thing that might make or break me is whatever comes next.

I don’t know if the making or the breaking comes next.

And I don’t know how to prepare for either.

I don’t know how to do nothing.

I am terrified of what comes next.

I’m not sure how to survive the next.  Because I can’t figure out how to be prepared for next.  And I have no control over what comes next.

There is this strange mixture of hope for the future and dread for the future that is happening within my person.  And while I talk about myself as two halves to make the point that both of those are present, I am only one person, feeling all of those feelings, and being both the hopeful and the dread-filled woman, simultaneously.  It is a strange feeling.  It is terrible in many ways.  I feel at odds with myself.  I feel like I am out of control as I fight with my own psyche.

But today I realized that there is reason for hope.  And that reason is my parents.

I get the worrisome and ordered parts from my mother.  I get the laid back and love-offering parts from my father.  And that combination of traits created a long-lasting marriage.  It wasn’t always the perfect relationship, but it was beautiful even through the difficult times.  And it worked.  It lasted until death parted my parents.  Those two parts made a beautiful whole, that endured all sorts of struggles with strength and grace.

My court date falls on the day after what would be my parent’s 48th wedding anniversary.  It comes just three days after the 2nd anniversary of my mother’s death.  The unpredictable chaos of life, and the melding of personalities into a loving relationship are both represented in this week in June.  The caregiver, my father.  The lost mind of one who never stopped striving for control, my mother.  The ways that they stepped and swayed and moved toward and moved back made a dance of life.  It made a dance of the things for which no one could have been prepared.  It made a dance of the struggles, because the two sat together.

I see that which was passed down by my mother and that which was passed down by my father, the two seemingly competing aspects of my personality, and I know that all is not lost.  I know that these two parts can work together to recreate that dance.  To step, sway, move forward and back, and to find the way through even the most shocking and unexpected moments in life.  They found a way.  And I am a part of each of them, so I can find a way also.

Grief hits harder than you might expect in the second year after losing your parent.  I’ve been avoiding that subject lately, preferring to focus on what I need to be doing to get through the next 25 days regarding my hearing, my livelihood, and my important planning for the future.  But today, knowing that I am instructed to do nothing, and that the disability case is out of my hands now, I sink into the truth that it still hurts a lot to be without her—without them together, and the ways that they interacted.  I still have my dad, of course.  And I am so grateful for him.  He is a rock of support that no other can rival.  But I miss my mom.

That is a thing that I was not prepared for.  It is odd, because we had years to prepare for losing her, but I never expected that the mother whom I argued with and struggled to understand and who I strived to please and never gained approval from would be so missed.  That in the weeks leading up to an important moment in my life, I am looking back to the weeks that lead up to the end of hers.  That I would have to look at her picture to remember all the details of her face.  That I would suddenly be relieved that I have nothing to do, because I think what I should do—what I need to do for myself—is to be sad and grieve, and let this season be about more than the dance I am doing internally as I struggle toward my disability hearing, but allow it to also or instead be about the dance of my parents, and the overwhelming emptiness of the space next to my dad, where my mom used to dance beside him.

I’m so grateful that I am made up of the stuff of both of these amazing individuals.  I’m so lucky to be a part of them, and to be their legacy in the flesh.  (As an aside, I am the only one in the family who has a child that carries on the family name—and we are a little bit too proud to be the ones who bear the name of that legacy.)

I still don’t know what comes next.

And I’m still a bit terrified, to be honest.

But having witnessed lives that pressed on through the good times and the bad, in sickness and in health, for richer or poorer, until death parts them, I feel stronger.  I feel a little less helpless and a little more capable.  Because I am the product of those lives.  I am an embodiment of those promises.  So, if they could make it through whatever unexpected trial or joy might be coming up next, I can also do so.

I’ll meet what comes next.  I’ll lean into whatever comes next.  I will overcome whatever is next. Or be grateful and enjoy what comes next.

I am the dance.  The two parts sit together and create a good life out of whatever comes their way.

The two parts sit together and discover what is next.

Naked As We Came

 

I’m listening to Iron and Wine. It is a little depressing.

It isn’t depressing because of the death aspect. The spreading of ashes around the yard doesn’t frighten me a bit. In fact, I am uncommonly comfortable with the concept of death. Maybe that is in part due to the losses that I have endured already, and the many people that I have “laid to rest”. Maybe that is also due, in part, to the times that I have had to face my own mortality.

It isn’t something everyone faces. Many people don’t sign the pre-operative forms that express that you may not come out of this procedure but are consenting, nonetheless. Many people don’t hear the diagnoses that make you wonder if you will still be around next week or next year or next decade. Many people don’t get the calm, and totally bullshit, speech about how “you needn’t worry because it might be nothing, but we need to make certain”. (If they really believed it was nothing, they wouldn’t need to make certain of anything, obviously. They do think it is something. They don’t refer you to specialists for normalcy.)

So, I’ve stood by as they lowered friends and family into the ground, and I’ve known the threat of death enough times to know that I don’t want to be put in the ground, but scattered to the wind. But the thing that makes me a bit depressed about the Naked As We Came song, is that I haven’t really imagined scattering someone around the yard, or them scattering me. My visions of death are rather sterile, and not at all attached to the presence of persons loved or who love me. I always seem to imagine my end in ways that connect with bright lights and cold metal tables, and not with the loving gestures of saying goodbyes and sending on those whom we have known with grace and beauty—casting them into the universe in their new ashen form, and in doing so, letting them go.

I remember after my friend Charles died, I spent a lot of time around his place and his family. There was something comforting about being near them, and they were just a bunch of good guys, in general. One day Pops, Charles’ dad, blurted out, “Catch!” He tossed me a little box wrapped in brown paper and I caught it.
“That’s him,” he said, almost too matter-of-factly.

But it was very matter of fact. It was a fact that this little box of ash held all the matter that was Charles. Charles + fire = this little six pound box. Holding him in my hands was not really all that significant. It had been significant to hold him before, but now all passion and connection and feeling was lost.

I’m not cold and crass in the ways that that statement might seem to express. I said my goodbyes as he lay dying in the street…crying out to the sky with a voice so pained that it hardly seemed my own. Sometimes you feel pain in ways that make your own pain foreign to you. I have that experience a lot, actually. Probably because my childhood made me an expert at dissociation. I can stuff my pain into hidden places and not find it for ten or fifteen years.

But I digress…

So death is not the struggle—not the thing to fear or fight against. But the not having someone who scatters those ashes is a fear. Or maybe not a fear, per se, but more of an unfulfilled longing.

My dad recently chose to impose a DNR and remove medication from my mother. She is in the later stages of Alzheimer’s and has spent most of this year in a nursing facility. My dad cared for her for the past several years, but she is unable to communicate, and doesn’t always cooperate, so it became impossible for him to keep caring for her at home.

I watch him now (or listen to him, I suppose, since I haven’t seen him in a year) and I see the ways he mourns this loss, slowly and deliberately moving through a grief and a death that doesn’t seem to have an end. Alzheimer’s is brutal that way—it takes so long to bring about the end.

I see him care for her in ways that I couldn’t have imagined ten years ago. It wasn’t that they didn’t love one another. I think they always have on some level. There were worse times and better times in their relationship, for certain, but that is what you sign on for when you vow “for better or for worse”, right? But these last few years, watching him become her caretaker and watching her slip from adult to teenager to toddler in her mindset and capabilities, I have seen something beautiful. I have seen a kind of love that my parents never allowed one another in their younger, more prideful, more strategic periods of living. Because when it all falls apart the need for one another becomes so great that all the other things sort of disintegrate. The need to be right, or to dominate, or have things be fair, or to maintain your autonomy, or any number of things that we insist upon in our relationship, all faded away for them and they became wholly devoted to one another. And some of that devotion was borne out of the reversal of their roles and an ability to show a side of themselves that was previously held in check or deterred in some way. My mom was always a control freak, until she lost control of her own mind. And my dad was always dependent by default because of that. And this period in their lives has flipped that relatedness on its head. My dad is the one in control and my mom is dependent upon him for all things. It allowed parts of them to be brought to life and strengthened their relationship, even while it slowly brings an end to their relating to one another.

And, while I don’t wish a slow, debilitating death upon anyone, least of all myself, I find myself envious of their experience in some ways. The romanticism of giving up everything for the one you love. The commitment to keep fighting and keep loving someone else through the thick and thin of life and relationship. The beauty of a history that can be passed on and can create legacy where once there were just a couple of lives. These things are the things that my life still hasn’t held.

And it isn’t that I am desperate for those things now. I’m not. I’m rather resistant to the idea of being tied to someone or not having autonomy or dealing with the complicatedness of joining lives. But there is something about having those things in my old age, in the spreading of my ashes around the yard, that seems very desirable, and the knowledge that I do not have that is what seems depressing, at present.

Of course, my beautiful daughter would scatter me to the wind with love and blessings and grace. I won’t just get dumped in the trash, thankfully. I’m sure that all the goodbyes spoken and felt will be beautiful and loving and good. But, that care and love and building of a home together are still such lovely ideals.

And here we have it again. The life of contradiction. The dichotomous being that I am.

I want to be alone, but I want to build a life with another. And you can’t really do both, I don’t think. I love the “both/and” option, but I don’t know that it is always a possibility. I can’t really avoid relationship and also have an ash scatterer in my life. And that is also depressing. Because it means I need to choose. And choosing means summoning a bravery that I’m not sure I currently have at my disposal. Because both options require what I haven’t yet got. One requires the opening of the self to the risk of being hurt and damaged in new ways. One requires giving up the ideals and the futures that Naked As We Came offers, and letting go of the ash scattering love. Both seem too difficult to accomplish today.

They are too difficult to accomplish today.

And they were actually too difficult for any partners in history to accomplish in a day. I suppose that is a comfort. It took 45 years for my parents to find the place where this transformation happened and I could see their love in this new light, so it might take some time for anyone to develop this idyllic relationship.

Your ash scatterer doesn’t just magically appear, I suppose. They are forged over time.

That seems a bit less depressing. That offers a bit more hope.

Maybe I can still build a home…after I am ready to risk. Certainly not today. But maybe someday. Maybe soon.

Hopefully, before I become ash.