I’m going to need you to trust me with this post. Despite the length and the complexity and the heaviness, I need you to hear it all the way through. It’s going to get harder to read before it gets easier, but I promise we’re all going to be there at the end, reflecting together, maybe crying a little, but with a lot more understanding and compassion – not for me, but for what we are all enduring together in these darker days, these painful days experienced by our families, our neighbors, our brothers and sisters of the Universe, and those we don’t even know, all around the world, facing their own impossible year. Through love and God (in whatever form God takes for you) we are going to try to make peace in our hearts and minds possible again.
Also – this is basically a draft, written in about 3 hours, without much editing. It’ll be messy at times. I’ll probably switch tenses at awkward moments, the grammar and syntax not up to par. Blame it on the lack of adequate oxygen, or the lesions, or any number of things, but please be a little forgiving with my lack of perfectionism. I just wanted it out in the world as soon as possible.
A year ago today, September 27, 2015, the world lost one of the brightest lights it’s ever seen. Here name was my name, but she went by Memere, or by Rhea Senior. When people used to speak to me of death, my emotions and reactions stayed abstract. Yes people die, and it is unspeakably sad for awhile and then life continues its’ procession through time. But when Memere died, the abstract came into a sharp, painful focus and time really just … stopped. The shock, combined with the deepest fear and loathing that I’ve ever felt, acted like a protective shield between me and reality for months following her death. I didn’t really start to processes the event, my grief, my feelings of inadequacy and guilt for having not fixed her this time, until months after the fact. In my darkest moments, there was an all-consuming guilt that not I only had a failed to help her, but that since she had placed her trust in me and followed my suggestions regarding medical care, that I had orchestrated her death and abandoned her right on death’s doorstep. I could write a book on all the times I’ve moved home to help her recover from one illness or another; I could try and count the doctors appointments I brought her to and the explanations I tried to give her, but in February of this year, as I started to wake up to the duller, darker world around me, those memories fell away and the only thing I could tell myself was that I hadn’t listened to her concerns, and I had dismissed her fears, and that I, the one that shared her name, had actually killed her.
That’s when the panic attacks started (or more accurately, started up again, after years of dormancy) and I realized I needed help. I started back on anti-depressants (probably for the dozenth time in my life) and on an anti-anxiety (same) and I started to see a counselor weekly. I haven’t missed one appointment since and just last week, we finally started to talk about grieving. The steps involved in a “complicated grief” like this one are a little different, and even though after a year passed, after each new holiday and birthday and moment came and went without her – I still feel like I’m just starting to hold the truth in my hands: my anchor is gone and I am untethered.
Not everything in the past year has been steeped in suffering or blackness. There have been normal, happy, even “joyous” moments. Through the love and effort of friends and strangers alike, I won a contest to have a $10,000 “smile makeover” which in an odd way, changed my life. It made it possible to talk to people without the overwhelming desire to fold into myself and disappear. It has, shockingly enough, made it OK to smile. Can you imagine that? I’ve actually had to get used to smiling. Strange work indeed, but miraculous.
Oh, and then we bought a house. More accurately – Thommy and the best realtor in Wilmington, NC, bought a house; I was still too numb to partake in the process, but we met with her on December 15, 2015 and we moved in on my 33rd birthday, February 18, 2016. It is pretty much our dream home. Did I forget to mention we moved back to Wilmington – roughly 5 miles north of Carolina Beach, and 15 miles north of Kure Beach, where we got married? Well, there’s that blessing too.
Our First Home (a photo gallery for those interested)
But here’s where I want to circle back a second and update anyone who might not know about the newest round of health issues. I was diagnosed with something called POTS (Postural Orthostatic Tachycardia Syndrome) back in 2014 and went out of work on a short term disability because I blacked out intermittently and could barely sit at a desk for 8 hours. That short term disability turned into a longer term issue and at the advice of my doctors I applied for full disability (since apparently it wasn’t just the dozen diagnoses I had that could get me approved, but the serious hit I had taken over the years to memory, cognition, recall and other mental capacities that the MS lesions had turned their wrath on… it’s also one of the reasons I haven’t written much in 3 years… to go from a 4.0 English Major to someone who can’t figure out when to use apostrophe-s, or s-apostrophe, well, that’s an assault to your ego).
Anyway, this June, in record time, I was approved for Social Security Disability – and actually, my Medicare card came just yesterday. I graduated on time from Cortland after having to take a semester off for my partial colectomy (which meant doubling up on credits and working extra hard despite the pain and inability to focus as well); I’ve held MANY jobs over the years, always giving 1,000% more effort than I probably should have because I loved to work, and felt it was my responsibility to prove to employers that I could handle it (even when I couldn’t); I withdrew from Penn State after my MS diagnosis, but after a couple months found work again, never looking back for too long at what I was leaving behind; and I even worked for weeks ignoring a stabbing pain in my eye, suspecting it was “just glass shards” from an earlier work accident, before I discovered I was experiencing my first bout of optic neuritis (from the MS) and lost vision in my right eye for 3 months; one day I even drove an hour to work, worked a full shift, drove an hour home all in the most excruciating pain because come to find out I had been suffering from both a small bowel obstruction AND a 1cm gallstone (Justin, if you’re reading this – this one’s on you and your housewarming party, I release myself from any personal responsibility); and let’s not forget checking myself into Renfrew mere weeks after having my total colectomy because I needed to start the hard work of recovery right away, before I lost the nerve to safe myself.
All this to say that part of my self-identity has always been formed by being a stubbornly hard worker. And now, today, I am fully disabled and on Medicare. At 33 years old. This wasn’t how the story was supposed to go. And none of this does anything to assuage the fear I’ve held deep down for many years: that since Hirschprung disease can be fatal if not caught early, and mine wasn’t diagnosed until I was 19, that I was put on earth with a very clear expiration date. That there was no plan for me. That my large intestine was supposed to rupture, make me septic and kill me. But I escaped death, “Final Destination” style. And now there is no plan, except maybe as a collector of diseases, as one does with butterflies – each one preserved and protected in the shell of my body. What makes this possibility especially difficult to bear is the fact that sepsis is what finally took Memere from us. I mean, it could have started from the fractures in her back that made it impossible to stand up, walk, sit or lay down without excruciating pain – or it could have been the morphine that she swore would kill her if forced to take it because “that’s what they give you right before you die” (and I told her it was OK to take because I desperately thought it would diminish her pain and let her rebound, as she always had before) – but what the death certificate tells us, is that she died of septic shock. Her body poisoned, just like I have always assumed mine was, is and always will be. Toxic.
And if you’re having a hard time following all this, I understand. I’m still struggling to comprehend it all too. Especially after the last month as I have become increasingly sick yet again with a constant and severe shortness of breath (even normal conversation leaves me winded), I can’t stand up for longer than 5 -10 minutes at a time, and my always low Blood Pressure has rather suddenly become comically low. We’re talking daily readings of 70ish/40ish (sometimes a little higher) and a pulse that ranges from 35-145 (no, that’s not a typo). And as you can probably imagine by now, I don’t have an implicit trust when it comes to doctors or the medical community. Because I was told for 19 years that I was fine (or worse yet, that I was faking my symptoms, even mimicking them for attention) before I was told that I was in fact very, very sick. Because I was told for months that I had an inner ear infection before I was finally told I had a dozen lesions on my brain. Because… well, for more reasons than I can recount. Our threshold for ER visits is extraordinarily high. And yet last week, when I went to see my regular doctor, she took one look at me, and immediately sent me for a stat CT because she was sure I was having a pulmonary embolism. For those who haven’t heard the story, or don’t follow me on Facebook, you can catch up here: Hospital Stay
So. Now we’re here. At home. With no answers, only lots of questions. And this is where I want to tell you about fatigue. I haven’t felt awake in years. That’s not hyperbole. My counselor actually asked me the last time I felt real joy. I think I might have felt it after my teeth were done, maybe when we moved into our house, maybe when a charity event I helped with raised a lot of money for an amazing cause. But it’s the most muted joy you can imagine. The volume is turned all the way down. I’ve taught myself to smile for the sake of smiling and mimic happiness that I see others display; I observe and adapt to my surroundings to blend in and make it through social interactions. Otherwise, I’d be confronting a terrifying truth with every moment spent in the company of others: I don’t know how much energy is left to fight.
It would be so easy to blame the circumstances of the last week for my current mental state, but real truths are rarely easy. The real truth is I’ve fought suicidal ideation since my first surgery, at 19, when I would sit on a small chair directly in front of the door in our home, waiting for one of my parents to get home from work and be with me. I would sit for hours. In 2012, after enduring months of increasingly debilitating side effects from Rebif, and suffering from one of the more severe depressive episodes I had ever had, I collapsed on the bathroom floor and called the suicide hotline, whose number I had memorized. And then this summer, (forgive the lame metaphor) but this summer has been a roller coaster of planning, accepting, and then fighting like hell to banish the thoughts, then a long period of intense guilt for even entertaining the idea, before I remember that these thoughts aren’t a choice born of selfishness – they are for me, and many others, the culmination of being too tired to endure pain that greets you every morning and rocks you to sleep at night, and the truth you feel at the base of every nerve and fiber and bone in your body – that you are the world’s greatest burden to your family and friends and every soul you’ve ever touched. Despite all evidence to the contrary, despite the deafening love that’s been shouted at me from every monumentally important person in my life, all I can hear clearly is the voice that says “enough” – you have put these people through enough. What you offer them in no way compares to what you take. In my heart, I want to be a beacon of light but my mind knows I am a harbinger of darkness and anguish and the only thing I consistently offer those in my life is worry – or pain. This math does not add up. I can never repay what I have taken.
With that said, and with no way to predict the future, this is not a suicide note. I am, right in this moment, not going to kill myself. When I speak of death as being a comfort, or when I tell people how much I love them and I thank them for their light in my life, it is not because I plan to snuff mine out today, or tomorrow, or next week. I can’t predict how any of this works, but what I needed everyone to hear is how tired and weak I am today. 33 years is a long time to fight. When you can only take 1 shower a week because that’s the only thing you will be able to do that day, and you have to make sure your husband is there so he can walk you back and forth from task to task and hear you if you pass out – when you know it’s the only thing you will accomplish that day, and the task from start to finish takes 2, 4, sometimes 6 hours (depending on how well the day is going)… well that takes it’s toll.
So do these:
Those are just the ones I take daily – there’s a whole different box for the “as needed” variety.
If you’ve made it this far, God Bless You… and hang on for just a little longer because I’m about to get to the point of this post. (No, none of this was it.)
I am actually so fucking blessed, it’s what I continually refer to as “an embarrassment of riches.”
People far sicker than me fight for disability for YEARS – including war veterans missing limbs and suffering daily from PTSD most of us could never imagine. They struggle every day with their pain, their isolation, their flashbacks, their scars, and they are offered no discernible treatment or respect here in the country they fought for. One statistic puts the number of veteran suicide at 22 a day. This is a stain on our country, as is the entire mental health service field, for veterans and civilians alike. We dismiss our brothers and sisters with innumerable mental illnesses that they can not control and for which they receive no help. The stigma needs to end. Hearing that a friend has been diagnosed with Bipolar Disorder or Schizophrenia should illicit the same rally from their community as if they had been diagnosed with cancer. Offers to help with daily tasks, offers to drive them to appointments should come flooding in and TEAMS of medical professionals should treat it as their top priority. My own mental illnesses have been a struggle, and at times a dangerous one, but I am comparatively lucky and I know it.
No, I can’t get off the couch most days – sometimes for weeks at a time – sometimes months. But having just been approved for disability and with a husband who has an amazing job that he loves and supports us financially, I have the luxury of worrying only about myself. There are single mothers and fathers far sicker than me who work one, two, three jobs to keep their families from becoming homeless. And here I sit with the AC keeping me cool during the humid, sticky days of summer. Here I sit while Thommy goes to work and tries to focus and run a great business and be a great leader for his incredible staff, all while he worries about what I’m doing here. How I’m doing here, alone. My Mom sits almost a thousand miles away with nothing to do BUT worry. It is far easier to be the patient than it is to be the caretaker. Let me repeat that, and I’d ask that you say it out loud: IT IS EASIER TO BE THE PATIENT THAN IT IS TO BE THE CARETAKER! And so many of us are still uninsured. I was when I was first diagnosed with MS and we had to file for bankruptcy that year. But because we are blessed, we have been able to climb and fight our way back and just this year we were able to lease a new Jeep when our old Sebring died, and I’m writing this from the comforts of my house (which may seem like a prison at times, but it is in fact NOT a prison, and furthermore, I am not homeless – but by the grace of god go I).
I didn’t get answers at the hospital this week, and some nights, we weren’t entirely sure my heart just wouldn’t go silent. But there are women’s and children’s hospitals being obliterated in Aleppo and thousands of children dying as they escape war torn countries, with no where to escape to safety. The ones who have made them refugees are the same ones refusing them aid and this country is a shameful part of that nightmare as well. I’m not interested in your politics but if you can’t see what a humanitarian crisis this is, and are looking to place blame elsewhere to absolve yourself, then please do not communicate that to me. I do not understand that level of hatred and I am too tired to try.
There are families in Syria and many other war-torn countries who sleep in different buildings at night so if one apartment is bombed, the whole family unit will not die.
There are parents right here in the South (and across the country) who are terrified of sending their transgender child off to school for fear they will be bullied, assaulted or killed. I can’t imagine that fear. It shouldn’t exist. I don’t understand what the fuck is wrong with people.
I worry about a thousand things every day – my mind diagnosed with obsessive and compulsive thoughts and altogether they weigh me down into the ground, but I am not the parent of a black male who must feel fear and anxiety and stress to a level that I can’t comprehend every time he leaves the house, for fear the police who are supposed to serve and protect will deem him without privilege or rights that his white counterparts enjoy, and will shoot him in cold blood. The need for police oversight and training is so far past due and the debts we, the privileged ones in this country, are incurring are exceeding what I fear we can ever repay. What must that anger and fear look like when faced daily? My privileges don’t allow me to even guess but my heart is breaking every day for families I don’t know who are enduring pain I can’t imagine, and that’s not enough. I want to DO SOMETHING meaningful to use my privilege for good use. I don’t want to think my hashtags and my prayers are enough. And if for some reason, you’re one of the people who have prayed for me this week, but can’t understand why you need to pray and WORK at ending systemic racism in this country – full stop – then please take me off your list; I don’t need your prayers only because I check off the right boxes on your “who deserves Gods’ grace” checklist. That’s not a God I believe in.
And the grief of this year. My tunnel vision combined with the fact that I can’t ever explain to those who didn’t already know what Memere meant to me has caused a sort of callous to form on my soul, and I seek to soften it. She lived an amazing 89 years touching thousands of souls and I was able to have her for 32 years. That in itself is an unspeakable blessing. And yes, I admit, I am suffering. Deeply. Still. But what about those this year who suffered a miscarriage, or multiple, or whose adoptions fell through, or lost a child to illness or tragedy? How devastating their grief, how fresh and unfair that they needed to suffer the loss of life before it ever began. My heart breaks for those mothers and fathers. It breaks a hundred times.
This week on Facebook I’ve had friends send countless messages of encouragement, love and PRAYER, so many beautiful & meaningful prayers – some have even asked their friends (strangers to me) to lift me up in prayer. To each and every one of you: your prayers were answered. I have been elevated so that I can see over and beyond my own despair today and though I do not have a right to ask any more favors, please indulge one more. In my name, in Memeres name, please say just one more prayer for all these beautiful souls mentioned above who are suffering beyond our comprehension – that God may lift them too and that they too will be noticed and seen and heard and helped. On this day, on this one year anniversary of her sunset, on this day I wasn’t sure I’d make it to, let it be an offering in her memory and legacy.
If I can aid in the lifting of one soul in the spirit in which mine has been lifted today, I will have done enough for this moment. None of it possible with you, reading this.
Let’s remember all those facing their own impossible year, and together work to make sure that some life and light creeps in to the next day, week, month and year. Let’s make the impossible possible; let us together bring hope to the hopeless.
There’s no sunshine
This impossible year
Only black days and sky grey
And clouds full of fear
And storms full of sorrow
That won’t disappear
Just typhoons and monsoons
This impossible year
There’s no good times
This impossible year
Just a beachfront of bad blood
And a coast that’s unclear
All the guests at the party
They’re so insincere
They just intrude and exclude
This impossible year
There’s no you and me
This impossible year
Only heartache and heartbreak
And gin made of tears
The bitter pill I swallow
The scars souvenir
That tattoo, your last bruise
This impossible year
There’s never air to breathe
There’s never in-betweens
These nightmares always hang on past the dream
~Panic! At The Disco