Greetings fellow travelers,
I hope that wherever you’re reading this from, you are safe.
I haven’t been safe in awhile.
Yes, I have a roof over my head. (A new, expensive one at that; first year home-ownership can be stressful).
Yes, I have food and water. (Well, sometimes there’s food – usually the fridge is empty-ish and even when it’s not, I’m not really into eating it.) This fact alone makes me safer than millions and millions of people.
I am – generally speaking – not in danger.
Except last week. Last week, I was in a lot of danger. And it wasn’t the first time.
It comes as no surprise to anyone following my story that as a “Professional Patient” I spend most of my days balancing doctors appointments and symptom-tracking and medications. To be honest (and you should always be honest, right Justin?), I’ve been doing a truly shitty job managing my illnesses. It starts simply enough – one bad day. That bad day leads to two, and by then I’ve decided nothing I could do matters and I let go of the controls. Sounds healthy, right?
So a couple of weeks ago, as I was juggling my annual OBGYN visit, IUD discussions, a urology referral, a visit to UNC to discuss my constant nausea and further testing, a mammogram, vision testing for new glasses and contacts (and WAY more money than we have), my therapy visits and then 3 or 4 “normal” appointments, I kind of lost my mind.
The thing is, it wasn’t even beyond the scope of normal; that’s a pretty average week in my life. Where things started to go sideways was in the creeping, slinking, insidious feeling that an MS relapse – or something worse – was coming on. I’ve described this enough times that I feel we are all comfortable with what this looks like, so I’ll just summarize by saying that at this point in the story I was no longer in control of my motions, thoughts, words or feelings.
When Thommy and I went on our annual wedding anniversary trip in early October, we spent most of our time playing the previously referred to “ER or nah??” game. I didn’t want to go to an ER out of state (we were in Tennessee) so we just assumed the worst was yet to come and tried to enjoy what we could of the Smokey Mountains. BUT, because my brain wasn’t working properly, I forgot to pack both my cane AND my handicap placard, so we weren’t able to do much sightseeing or exploring. In fact, we barely left the condo. Since we’ve been married for 9 years, and together for 13, we don’t need a lot of special attractions to enjoy a trip; just being in each others’ presence is special enough.
So let’s catch up: we got home, the symptoms got way worse, and on Friday, October 27th, I went again to see my primary care doctor. He took an X-Ray of my neck first to see if that could explain some of the symptoms. Luckily, it did a little – I now have 3 herniated discs and something wrong with the curvature of my spine – and had we not had more pressing issues he said we would be discussing physical therapy, cortisone shots and possibly surgery – but since I couldn’t feel my leg or finish a complete sentence, we had bigger problems.
He sent me over to the hospital as a direct admit. He assured me they would give me sedatives before the MRI of my brain, thoracic and cervical spine (a 2 hour procedure), but the hospital was experiencing a severe shortage of IV Valium so they gave me Ativan instead, and it did nothing, except possibly make me MORE agitated. Over the course of my stay they tried 7 IVs. 2 blew. One nurse cried and I did everything I could to convince her it was me, not her.
It is now Sunday, November 5th and it hurts just to type this. But what I want to say is important; I was diagnosed as having another MS flare.
After 3 MS medications THIS YEAR ALONE.
After the hell of Ocrevus JUST TWO MONTHS AGO.
The reason MS patients put up with all the bullshit is to STAY OUT of relapses. I tortured myself all year just to end up here anyway. And that’s JUST the MS – never mind everything else in my body hatching plans against me.
So. They prescribe 3 days of IV steroids (WHY, GOD, WHY?), fluids and pain management. Fine. I’m pissed but I can do this. What’s 3 more days in the hospital? I am safe.
I can’t do it. I am not safe.
A psychiatrist comes to talk to me on the day of discharge. “Are you safe at home?”
(Mental checklist: roof, food, check.)
“OK,” she says, “do you have thoughts of hurting yourself or others?”
Let’s do the easy one first. Do I want to hurt others? Like this guy – this guy here who SLEPT IN A CHAIR FOR 3 DAYS AND BARELY LEFT MY SIDE AND DECKED OUT OUR ROOM IN PENN STATE STUFF FOR THE GAME DESPITE THE FACT THAT I KEEP YELLING AT HIM AND CRY INCOHERENTLY?? No. No, I do not want to hurt him.
(Well, I didn’t. But now that I’m at home, in pain, miserable and riding steroid rage, ummmm…..)
But do I want to hurt myself?
Yes. I want to find a way to trump the pain I’m in every day, I want to be the one doing the hurting, actively, so I’m no longer passively being injured, I want it to be quiet, I want it to stop, I want it to end. Please. Make it all stop.
“Would you allow yourself to be voluntarily committed to our behavior health unit?”
What’s left to hide from? What’s left to be scared of? I’ve seen the worst, I’ve felt the worst, I’ve been in the dark for a long time.
What it feels like she’s asking is, “Do you want to save what’s left of you?”
And that’s where another story starts and ends. The only other time I’ve been hospitalized for mental health issues since Renfrew, and this time it was only 3 days because on the chaotic and teary night of admission I signed my 72 hour release form. (They really should make you wait until morning to do that, but what do I know…)
So basically I asked to leave before I had even fully been processed.
But that’s OK because 3 days in a psych unit is a powerful time. Every single person you meet changes you forever. And I want to do justice to that story so we’ll save it for another day.
But what I want you to know now is that on Monday, November 6th, I will start a 6 week intensive partial hospitalization; that means from 9am to 1pm I’ll be in intensive therapy, both group and individual and I’ll meet each week with a psychiatric nurse to continue to adjust my medications and with a psychiatrist to keep this journey moving. In addition, I can still see my normal therapist once a week, who I’ve been seeing for two years, and who has been remarkable.
There are three other things I want you to know, and they are so important to me, that I’m asking you to really hear the words in your head – and I’m asking you to remember.
1.) I would be dead right now if it wasn’t for Thommy, my mom, a handful of the best friends I actually don’t deserve, and a tribe of “Rhea Team” warriors who pray for me and send me their positive energy and their love and their notes and their gifts and who keep showing up despite the tedious repetition of my illnesses and shortcomings. I know that I am blessed. I do not take it for granted. Please keep reminding me of the good things – please keep your words of love and light coming; it’s my way out of the darkness.
2.) You need to vote better. Sorry if that’s whiplash but it’s true. You and me both. I am getting the most amazing, thorough and continued treatment because of insurance. There was a time I didn’t have that. And there were people I met in the hospital who were released before they were stable because of insurance. Cuts to mental health services, Medicare, Medicaid, etc, literally, literally, literally KILL PEOPLE. I might be one of them. Vote in every election you can for leaders who will protect those services. I can’t believe this country works that way but here we are.
3.) Mental health stigma needs to end. And it can start with you. Stop using the word “crazy” a dozen times a day when it’s not necessary. That’s the easy one – challenge yourself today and see what happens. Don’t use diagnoses as adjectives. OCD, bipolar, schizophrenia, manic/mania, depressed, anorexic/bulimic, PTSD, cutting/cutters/self-harmers … all those things are real life. They can be nightmares that people may never wake up from. Some of us will get help and regulate it but we ALL need to stop carrying around the shame of it. It is not a punchline to your shitty joke. If someone trusts you enough to share their story with you: listen without judgement. You don’t have to fix them. You don’t have to feel their pain to help them through it. You can hold space with love and respect and allow them to process their emotions freely. Not everyone is ready to accept help – it is not your job to lecture them. Memorize the number to the suicide hotline (1-800-273-8255) so that you can provide a resource to someone is crisis. (Obviously, if it’s an emergency, call 911). But from experience, I can say that I’ve lost track of how many times I’ve had a meltdown on the phone with someone while I told them I couldn’t make it one more day – and the act of simply being heard has kept me here one more day.
One more day.
That’s what’s left.
Or, like we talked about in the hospital, one more minute. It’s 7:31am right now. Can I make it until 7:32am? What can bridge those 60 seconds? Breathing? Medication? A phone call?
I know I said I needed you to know 3 things, but I lied, there’s one more:
I am not ashamed. As someone with complex mental illnesses AND complex physical illnesses, stuffing that all inside and hiding it from the world is what usually gets me into the darkest recesses of my mind and keeps me buried. As someone with mental illness, I *DO* feel guilty, all the time, for hundreds of things, real and imaginary; but, what I don’t feel guilty about, is sharing this with you. There is a level of self-loathing I experience that I didn’t even have words for until I was on the psych unit, but my head will not hang one inch lower after posting this and sharing it. I hope if you read this and you want to talk, you reach out. I hope if you read this, and you are so inclined, you share it with your circle because there might be someone who needs to read it and know help is out there and they don’t have to feel alone or ashamed.
I’m redefining myself with the pieces of what’s left; and with each new illness and test and hospitalization and med change, etc., I do feel like I lose some of the person I wanted to be. Or at least the person I thought I was. But there is so much power in realizing you can create someone new. And know this: if you’ve had to do this (I mean, REALLY, do this): you are a fucking superhero. Suit up. Here’s your cape…