A Note Written by Eric August 13th to a few of his closest of friends a week before Carleton died.

A Personal Note to Readers:  I share this note to help those who do not have an appreciation nor have been involved in the care giving process.  I share it with those who need to know more about Carleton’s last days.   I share it to provide a clear picture of the horror one might face when not given enough support and when watches their most loved partner in the last days of their own demise.  It is a message that I could not share publicly for fear Carleton would read it and give up what hope he had left.  So, be warned, it is an intimate letter, from the deepest part of a person’s life, during a terrible tragedy being shared so that others might learn how to respond when these tragedies face someone they love.  

The words at times are harsh, but in life, the perception of others is harsh.  At times, care from family is not to be had, even after repeated requests.  Does the letter contain judgment of family, quite possibly.  Do I stand by them, most certainly.  Do I accuse, no.  I simply place the reality of the situation at your feet, from the individual, the care giver, who could not find support.  The government had refused to assist. There was no financial ability to access care.  No family support at the time except phone calls.  It came to this letter to some dear friends, the only plea ever made by me to those few around who I would beg, hoping they would save me, and Carleton, too.  Pride and Privacy had kept me going this far, but I could no longer access those assets to sustain me.

It begins:

Some of you have been wondering how Carleton and I have been doing.  There are good days and bad days.  There are moments of hope and fear.  And, fortunately for me, I simply walk in hope and faith regularly.  But, I am human.

Yesterday, Carleton was sitting next the kitchen while I was working on client information, running laundry, and addressing e-mails for GSDBA.  At around 3pm, as he was walking, his legs simply stopped working to support him.  I had to run and help carry him back to his chair. 

It was then, out of his mouth, with his face wrinkling in abject despair, that I heard the sobbing that I feel only comes from recognition of what feels inevitable, especially to one who is not a fighter, yet has fought for two years valiantly.  I heard a high pitched, coming from deep within, despair cleaving the heart sob.  It was like he was attempting to hold it in so desperately, but that the pain he suffers, the reality of his increasing immobility, and the fact that he is 29 and wearing a diaper to address his body’s destruction caused him pause.  It is horrible to hear in the movies the cry of that person who screams that they don’t want to die.  It is an entirely higher and excruciatingly terrible level to hear it from someone sobbing, so frustrated, so fearful, and so unimaginably tortured with the very real prospect that his treatment strategy is losing and he faces a very real death. 

There I was, a person who, though positive in nature, unable to lie about reality.  I wanted to call up my mother and yell at her that her insistence on her children always telling the truth was horrible.  Ultimately, all I could do yesterday for a time was let him cry, as I held him, before another load of laundry needed to be started, a phone call and e-mail from GSDBA Board members had to be answered, and oh yes, I still occasionally work on client related material that continues to stack up, or clean a section of one of the bathrooms for the second time that day.

Last night, I had to help Carleton in and out of the shower because his legs are so frozen in a particular bent position that they are not bending enough to lift him, alone to take a shower, or to leave the shower.  I had to physically lift and move his feet, one of them having been covered in urine, so that he could rewash and clean himself after having awakened from a dream, been startled, and I had rushed into the room, and scared him so badly that his body voided.  Imagine that he constantly has to strain to get these things out of him, yet the direction is unable to be determined due to the swelling, strain, and possible direction, much less the constipation.  In the last 6 days, I have cleaned two bathrooms twice a day, simply based on fear that someone might visit and think I live in filth because I am lazy.

I completed 5 loads of laundry yesterday.  Today I did four.  Why?  Because Carleton soils his clothes four times a day due to the cancer impacting his lymphatic system, the morphine causing constipation, and some cancer tumors in his gluteus area which means he must strain for 30 minutes (at a time) with extraordinary effort merely to void a few drops.  I consider it straining in his attempts to give birth to a child, but few of the muscles in that area respond well.  Yet when he is walking up stairs, using the same muscles or he is startled, the very adrenalin his body expresses at those times, betray him to cause those accidents.  His body is rebelling and is unable to execute what his brain has for decades easily accomplished.

There has been few outside visits from others in the last weeks, save five dear ones.  Carleton has refused to seek support from my friends without my insistence.  And, after a dark patch with his family, it is up to him to determine and encourage their participation.  From what I can see, I see little support for my predicament save from his mothers.  Since I have returned from Palm Springs, his friend Michiyo has been wonderful to visit, no drama, and do what I can’t keep up with doing.  She even insisted on doing a grocery run, cleaned the kitchen, and helped fold several loads of clothes.  Fortunate for me, one person personally came to check on me and I have my Mom to call when I am overwhelmed.

I think no one realizes that it is not just that you have to care for someone; but that the causes for the care may quadruple the amount of basic activities we might normally do in a week, just to maintain their dignity.

I think you should assume that each day there are hugs and moments of comfort for Carleton.  But, whether he is in the room or not, nearly every two hours or so, you might see tears run down my face because I dread his demise and worry about his recognition of it.  Yet, Carleton would tell you I keep my emotions held behind the wall.  I have had to harden my heart to the frequent (every few minutes) moans and wailing in pain, whether he walks or sits, or lies down.  Only when he sleeps, if it’s deep enough, does it stop for a while.

For me, it may be the most tortuous thing I can hear.  For the only thing that keeps me sane is the understanding that for a person who so passionately believes he has the creative ability to create solutions, that he can fix find answers, I know, in this case, there is nothing I am able to do but be present, be supportive, attempt to be comforting, be available, be a caregiver.  No matter how much I want to be able to bring a solution that I find satisfactory, I have not one.  I regularly grade myself with a failing grade on being present, being supportive, successfully comforting, being available, and being Carleton’s caregiver.  Being a perfectionist does not help in this situation and being creative does not either.  It is a terrible assessment to bring on yourself.  It is one I believe everyone faces when they are only allowed to stand by, not stand against, Death.

And, being someone who works with people on what to expect in their futures, well, I will be as prepared as anyone to walk with Carleton on that score.  Having been a pastor, being a financial advisor, serving the old and the dying, having had friends and loved ones pass on, sometimes the last few months, the darkest moments of bitterness I have are the ones where I realize, it seems, I am the one who helps the person to face dying.  And, today, I simply hate having that skill more than anything else in the world.  I hate being the Community Crypt Keeper.  Once it was a bitter joke.  Today, the experiences of 20 years in the Gay Community rest harshly on me.

Thank you for letting me share.  I needed to tell this to someone rather than bottle it up or have Carleton suffer through a momentary breakdown.  I fear that should his health deteriorate further, we will be forced to consider institutional care.  His parents will not even communicate a strategic plan when I have urged consideration less it create a reality of its own.  I clearly will be left to make those plans, alone.  I fear that within days, I will have to share this insight with Carleton, because I am only able to sleep in short respites due to his pain, his bathroom visits, his rapid deterioration of his transportation controls, and the many things he can no longer do himself.  He cannot walk under his own power from the living room to the bedroom nor reach the cupboards due to the limitations of his ability to stretch extending muscles.

I guess, when you want to know what thoughts to bring to bear, consider mercy is what I hope we find soon.  Luck, I fear, is not anywhere in the room.

I have to rush off to a client meeting.  I am better having simply written this down and shared it with some which I feel might find it valuable or understand that for me, my most intimate thoughts are rarely shared.  And, you have been given an insight into me few beyond my Mom and Celia, will ever know. 

Grief recruits for Zombie Army

Grief is one of the harshest masters in the human experience.  It brings the mighty low, the organized chaos, the challenger questioned, the loved despair, the hopeful discouraged, the defender defenseless, the thoughtful silence, the overwhelming overwhelmed, and the visionary sightlessness.  Every association with the loss is reviewed, catalogued, questioned, responsibility assigned and regularly judged at time quite harshly.  Grief, by many, is considered something we must go through.  Personally, I feel she is a witch, a dispassionate warrior, testing who will join her army of the unfeeling, the disengaged, and the unemotional.  She regularly is seen following Death.  She visits each person, sometimes multiple times, investigating, recruiting, rewarding, in hopes of growing her armies.

Death visits when someone must be escorted from this World.  Those spared must live with the aftermath.  Some will deny the visit, others will ignore it.  Still others face the consequences of connectedness and emotions, willingly or unwillingly.  Others will justify their role in Death’s visit and others will condemn themselves.  Death does not judge.  It simply is the last power that holds sway over our human condition.  It does not direct us to heaven or hell.  It merely brings peace to the suffering, uncaring for those it has not been called to collect, but delivers the gift of grief in the visits final moments.  No one ever questions its gender, likely because it never has discriminated in its inclusion.

Grief, on the other hand, is not as dispassionate as Death.  Grief and Reflection walk hand in hand staggering those loved with memories which ceaselessly repeat, disabling drive, raising concerns, causing frustration.  Few escape willingly this morass of review for these are the last of the connections.  Overwhelming quiet keeps rapt attention while sleep inescapably flees.  Regrets and understanding collide while mechanisms for coping are considered, abandoned or tried, with little success.  Questions that never were asked will remain unanswered.  Priority lies scattered as leaves in the wind.  Distraction is no match for despondence.  Peace is fleeting while Escape is unattainable.   Rage is only an episode away.  Stiffness in inertia slows every response scaring others, concerning others, perplexing others. 

Grief’s complexity magnifies her power in matrixes of malice.  No two events the same, no responses similar, grief throws the most experienced a new round of emotions to manage.  The matrix of reaction creates results differing in each victim each time, a chess board of emotions unpredictable in each event.  Intensity of the love experienced is multiplied by the interpersonal health of the relationship.  Add the sum of the processes and dependence of the victims while exponentially include the length of the tragedy but divide the moments of resolution.  Then add the years of interconnectedness and memories and multiply the previous sums of loss.  The recipe results mathematically conspiring to disable, disown, distract, destroy and deter the one remaining from the future.  No one can prepare for her challenges, her tests, or the results.  They simply experience it.

Others may rally to defend against Grief’s assaults out of concern to no avail.  The war Grief stirs is inside.  The eyes of the wounded turn inward to watch as heaven and earth war for their host’s sanity.  A new normal will emerge though what it looks like who can say.  Memories will regularly emerge to challenge, coerce, cajole. They will not have the power they have today.  The rush of the world will force movement, though Time holds sway today.  The battle for focus continues.  The strategies of coping create choices daily, postponing responsibility, enabling habits of management, disengaging the connections of life.

New Normal is the work of Grief.  Grief bears results regularly testing each person.  Many have met regret, remorse, and bitterness.  Others have become overwhelmed with Grief’s abilities to exacerbate emotions, charring connections between others, straining the receptors in one’s mind to manage the feedback from longing, abandonment, or loneliness.  In attempts to manage grief, the new normal strategies can have someone turn to outward management over inward mechanisms with short term or longer term impacts.  Ultimately, Grief has no clear result.  No time limit.  No dependence on the type of individual.  Grief individually assigns it best and worst cases to each individual, on a personal level.  And, with it, the emotions the individual least likely may expect.

Grief, in her process to test each person, has few questions.  She is merely recruiting and encouraging people to join her.  She visits each person to invite them to join her.  She requires that you go through her process, but at every chance suggests strategies that will keep them with her.  The process is tortuous; the question comes frequently to join her Army of Avoidance.  She suggests that the process will not bring healing, hope, and reconnection.  She hopes the victims of Life will cling to her, surviving only on memories of the past.  Her goal is to prune Life’s impact, the interconnection, and the energy from the human experience in weeks and years to come. 

Grief culls the barely living from those who want to return to Life.  Her results for recruitment are basic in this matrix of mourning.  It determines whether we return from Grief’s visit with a new appreciation of Life and an appreciation for the depth of the human experience and the impact of the person we loved.  The gift from Grief for making this decision is invigorated by a New Normal.  She is as wise as she is cruel.  This gift is one she provides because she knows that with it, she may return again to test, to torture, to seek our wish to escape the next loss, to avoid being overwhelmed by circumstances, emotions, and Death’s visits.  She may yet enroll us in her Zombie army, a growing host willing to avoid emotion and community.  Overwhelmed by Grief’s invitation proves too wonderful to resist.  Her only requirement is giving her their future.

It is the little things in life that create balance and annoyance

Grief makes the tiny things big for a time.  In my case, since my return from visiting Mom, I am finding some things that were, aren't.  And, some things are that weren't.  Let me explain.

Whenever I would leave on a trip, I always made sure that Carleton had a full refrigerator of food.  His soda selections, milk, orange juice, meals, etc.  I know that I would be eating with my Mom, clients or friends.  I wanted him to have what he wanted.

Yet, this last trip, I unconciously realized that everything in would perish and present a terrible odor upon my return if it were left to develop.  I simply didn't plan for the result.  Yes, I have been busy, and three days later, there has been nothing placed magically into the fridge.  Do you know why?  Because I would need to do it.  Well, except a friend realized the dillema this morning and delivered a carton of milk to make sure I could have cereal.  Of course, I have frozen things in the freezer, just nothing fresh. Ugh.

As I begin my process back to singleness, I become annoyed at little things.  Things Carleton promised to do, but didn't get around to it.  The closet project.  Helping me with organizing some files.  Assist me in reviewing every one of those strange boxes that go with you in every move, but you aren't sure any more what is in it.

I become annoyed at the things Carleton did do, but won't be doing them any longer.  Today, I realized I have to do things I hate but that Carleton didn't mind.  I hate folding clothes.  Hate it!   We shared kitchen duties, now I have to do all of the duties.  He helped me with chores around the house, usually vacuuming.  Even putting sentences into past tense as it relates to Carleton is annoying.

Yesterday morning, as I reached for the vacuum, the special filters he said he would order 6 months ago were, surprise!, not in the apartment.  Yep, I was peeved.  I look in the vacuum and there is the six months of dirt he vacuumed up.  Carleton had simply ignored using the vacuum with the filter.  I soon learned why.  There was no special website where he could order the filter.  He would have had to talk to someone on the phone!  His phonephobia continues to pester me!

Yet, I will admit that Carleton had a certain ying to my yang.  Normally his yang annoyed me.  Though, now, it bothers me less.  See, Carleton was fiercely protective of where he lived, of who he loved, what information people would or should know about him or me, and whether someone or anyone should have any knowledge, access, or ability to enter our home. 

On the other hand, I have always been a person who advertised in newspapers for the promotion of my career as a financial advisor while serving the LGBT Community as an advocate and volunteer.  I have been as welcoming to others as Carleton has been at being fiercely private.  I have always volunteered for decades and he was happy to be my personal hermit. 

I generally welcome any person to visit me at my home.  I didn't attempt to hide things of personal worth or value. The thought would never crossed my mind that it might be stolen.  But, it would drive Carleton into a frenzy whether someone was scheduled to visit or stopped by unnanounced or undeclared by me.

I saw my home as a refuge for those who might need refuge, a place of peace where I lived and obviously people could knock to find me.  He saw it as his safe place to be protected from those who would press or take advantage.  

To my surprise, mild surprise, several friends have repeated similar phrases that Carleton used to express in exasperation regarding my laissez faire, generally trusting policy.  Dare I say that a few have taken it upon themselves personally to not so subtely monitor and evaluate my home life, bringing their own penchants for defending against my rather hopeful attitude of seeing the good in others and believing easily trusting demeanors.  Dare I admit having a pollyanna complex?

My mom has regularly said that I'm really, really smart, but sometimes have no common sense.  Rene, today, would agree.  An issue arose where I was patiently waiting for someone to follow through on their word.  He was ready to involve the police.  He nicely said I was the smartest person he knows but he is frustrated at my complete lack of street smarts.  He said it with the same rolled eyes look I sometimes give friends when they just frustrate me with their lack of basic knowledge in budgeting or strategic engagement or basic political consequences of decision making.  As far as Rene is concerned, my year long adventure in Sao Paulo, Brazil taught me nothing.

Clearly, Carelton has pointedly assured that my lack of concern in some areas is balanced by those who share his, and my mom's, irritation at the very thing that makes me who I am.  And, that does not make me annoyed.  .

Now, if I can only figure out what to do with his shot glass collection and determine where to give his remaining FloVorIce he enjoyed.  Then, I will face the more daunting of Widower/Widow questions...  How to cook for one.  Dinner plans anyone?

The Cave of Once Was

Thoughts bead into rivulets of thinking. 

Clouds of remembering thunder as

Winds lift pictures into view.

Growing storms carve new streams of grief

Rushing over rapids of regret 

Crashing into my reality of loss,
Pooling in dark depths of this

Lagoon of Loneliness

While others suffer held, too

By the currents of near River Lost.  

Others try to cheer, comfort, worry, watch
As some moments freeze in space

Quiet thoughts of nothing join

Before a deluge of tears

Pound and break onto the heart rocks of reality.

I stretch for the shore
Gasping for breath
Drowning in sorrow.
Exhausted with the cold shock
A surprise eddy pulls me away
From today back to that 
Crevice of loss.
Chocking back sobs, 
Drowning in wails of will not be.

Now simply weeping with the waves as I dry off.
Too many times will I slip 
In this marsh of memory before reaching solid ground.
Stepping in the quicksand of stories 
Pulling me back to the cavern of woe.
While reminders I did what I could
Echo in the Cave of Once Was. 

[Eric thinking of Carleton three weeks after Carleton's death]

GOD. Tonight I miss him. I was doing pretty good for days, but since about 3p today.  Well, not so good after 3p. Stayed fairly busy until 9p. Then to bed. And after days of doing okay, handling the questions, managing the hugs, I guess when asked for the death certificate to close an account. . .

Those in grief hate being reminded they are in grief.  They hate being "debbie downers".  Yet, in that grief, while in that grief, they worry who will they lose while in that grief.  

I worry that I will "turn off" those who are used to my sunny disposition.  I am known for creativity and light, not darkness and sorrow.  I am the "strong one" and still will be, but today, the storm darkened my day, suddenly.

I was doing "so well", until someone who didn't know, asked how Carleton was doing.  I couldn't look into his eyes as I told one more person, he isn't.  He is gone.  Dead, died, At peace.  He didn't recover, he didn't get better.  But, I hope I do.  I know I will.  And, I grieve that, too.

I grieve that I didn't turn to others to check on them when I was overwhelmed.  Of course, others were in pain, but I could not reach out to them because my pain, my loss is/was overwhelming.  The only positive is that I know I still have a heart simply because each moment it is in pain, it communicates that it still beats in me.  

I will be okay because I still cry when the feelings overwhelm me and instead of becoming a rancid bitterness, it flows out of this pool of grief and loss.  This sponge will continue to be squeezed in love until the rivers of loss slow, then it will only be rinsed out when needed.  But, today, it does it today.

 I was doing so well, for days, clear days, hours of clear thinking, not stunned into depression and loss.  And, tomorrow, that clear day may come again.  I know it will.  Carleton would expect it and so will I.