Skip to content 
This past year has been one of unspeakable pain.
Of change.
It has stolen my breath away, wrung me and hung me out to dry, taught me to think a different way.
It’s been a year of endless treatment for my mental and physical health and it’s been a year of the deepest depression I’ve ever walked.
My life has turned upside down.
I’ve drowned.
I’ve lost everything, including my husband of 12 years, my home, my kitties, my financial security, my independence, my dignity.
It’s been a long and arduous road that I know isn’t over yet, and I truly have no idea what my future holds.
WHAT MADE ME SEEK HELP
Last year around the beginning of November, I knew something was terribly wrong. My self-esteem had been plummeting to an all-time low…probably from a combination of being unable to hold down a job, of not dealing with years of collected trauma, and of feeling like I was never enough for my husband to be happy with me. I’ve had fleeting suicidal thoughts throughout the years, but my passive suicidal ideation became an everyday thing. The smallest things would trigger me (a comment from Adam, one of his disgusted/exasperated looks, my grandmother saying Adam would leave me if I didn’t pull things together, etc.) and I was terrified that I was going to be my dad, who did kill himself eight and a half years ago. On top of this, Adam expressed his concerns over how little I thought of myself and gave me an ultimatum that if I didn’t get help and become more confident, he didn’t think we would be able to “work out.”
I voiced my suicidal thoughts and my fears to Adam multiple times, but he dismissed them because he didn’t think I was depressed enough to go through with them. He kept on pointing out the fact that real depressed people can’t get out of bed, they don’t have good hygiene, they can’t stop eating so they get fat, and they are pretty worthless when it comes to work or getting anything done. At the time, I didn’t know enough about depression or my own mental health problems to counter his arguments, so I would just listen, agree with him because I didn’t have a better argument, and then just feel so alone and misunderstood. My depression didn’t look like “normal depression” so I was always confused. Whether he thought I needed help or not though, I knew I needed it. By this time, I was battling suicidal thoughts nearly every day and I was frightened and exhausted.
The individual therapy I was getting was not enough to combat my deepest darkest thoughts, and I was afraid to go to the ER because I didn’t want them to put me in a psych ward (I had heard so many awful stories!). After some research, I reached out to a local mental health facility. Once they completed a very-long assessment, they recommended residential treatment, which I hadn’t ever heard of. It seemed less intense than a psych ward though and I thought maybe this was the perfect solution. I had been traveling down south to be in my best friend’s wedding, but when space opened up in one of their houses, I cut my travels down south short, drove back up to Maryland, and put myself into residential treatment the very next day. This was despite the fact that I would be in there for my 38th birthday and that I would miss the holidays with loved ones, which were super important to me. That is how desperate I was feeling.
At the time, my husband was supportive of me seeking help (he had given me that ultimatum), and I was so touched at how supportive the rest of my support network (mom, sister, mother-in-law, three cousins, and three close friends) was. I was super grateful for their love and support because I quickly realized I was way in over my head when I locked myself inside a house with 11 other mentally ill patients.
THE MAGNOLIA HOUSE
It was a beautiful house set in the back of a cul-de-sac in the midst of a plethora of hardwood trees that were shedding their leaves like a downpour. I first met with a doctor whose sole job was to assess me and determine what kind of care I needed. I voiced my concerns about whether they would be able to handle my medical issues (needing gluten free food for Celiac Disease, knowing what to do if I had a dissociative seizure, not forcing me to do an activity that could cause injury because of my EDS, etc.) It took an hour and a half to get through all of the intake questions, and once that was completed, I handed over my roll-up bag for inspection. They were very strict on what I was allowed to keep, which included absolutely nothing sharp or pointy, all toiletries kept separately in a locked closet that you could access once a day, and no electronics (including phone) allowed except for very small windows of time throughout the day. We were not allowed to lie down on our beds when we didn’t feel well (our rooms were locked during the day and we could only access them at night for sleeping) and we had to ask staff to unlock the bathrooms every time we needed to go.
It felt extremely confining, like some weird wacky jail that some of us volunteered for but others didn’t. The thing that was hardest for me to get used to was feeling like a kid again, but in all the worst ways. I was already a mini adult at the age of 11, cooking and cleaning the house my mom and sister and I lived in and teaching myself school. I had literally been on my own since I was 17. Not even being able to pee at Magnolia House without getting permission first really rankled my sense of independence and autonomy and I balked heavily at the suffocating rules. The other really difficult thing for me was not being able to escape the constant noise of living amongst a lot of people. Oh, and not being allowed to drink coffee (or any caffeine). What a stupid thing to struggle with, but I definitely did!
The house was fairly clean which I was grateful for. There were two roommates to a room, and four people to a bathroom. Everyone had rotating chores to complete each day and there was a single housekeeper who cleaned the bedroom bathrooms, which were a bit gross. The house looked charming on the outside, but after living there a couple of days, I started noticing minor but annoying things. The dishwasher was broken, and the printer too. There were neither enough forks nor enough mugs to go around, ever. There was a leak from one of the toilets. What grated my sensibilities was that I knew for a fact that my insurance paid this company $1000 a day for me to be there. If everyone had to pay that amount, the company received $12,000 a day from just one house (and they had multiple houses). They honestly couldn’t invest in basic upkeep? I could easily live without all of those things, but the cheapness made me feel like these people were just another greedy corporation, behind the guise of “helping people.” I tried not to dwell on these things and just focused on getting better, because I definitely felt like the potential was there.
SCHEDULE:
The schedule was very tight every day. We had 3 meals a day and a little bit of free time during the breakfast and dinner times. The rest of the day was filled with
- check-ins (this normally consisted of a staff member asking, “On a scale of 1-10, what is your mood? What is a word to describe how you’re feeling right now?”)
- group therapy sessions (I was introduced to Dialectical Behavior Therapy (DBT) and Acceptance Commitment Therapy (ACT) as well as art therapy and virtual reality (VR) exposure therapy)
- individual therapy sessions 2-3 times a week with an assigned therapist, and
- scheduled “outings” or meditation times. During the week, the outings tended to be going for a walk at the nearby greenway, and the weekends tended to be activities like bowling, going to the movies, etc. For meditation, we would usually sit and listen to a guided meditation or practice yoga. I definitely enjoyed being able to be outside and I loved the yoga, but I was not too fond of the other outings. The outings always tended to be very disorganized and stressful, and we had no option of opting out of an outing, even if we thought there might be something triggering in it. I was absolutely appalled that the company made outings mandatory and I broached this in a later letter to the company.
PATIENTS:
The other patients were respectful and I really appreciated that. Most of them were coming from inpatient facilities in Maryland and New York for making suicide attempts (and I thought, “Phew! At least I haven’t done THAT.” Oh, the later irony of that statement). Some were in there for substance abuse, others for depression and anxiety (usually stemming from some trauma they had experienced). One woman was there because of her eating disorder, while another was there because whatever trauma she had faced had literally shut parts of her brain off, and she now lived in the mind of an 8 year old. One man struggled with OCD, and another man came straight from jail. There was one woman who was older than I was, but most people were in their 20’s. It was a fairly eclectic group of personalities and life experiences, but my overall takeaway was that anyone could suffer from mental illness (including those put-together people you’d never guess struggled) and the important thing was we were all there to get help.
STAFF:
The head cook, R_____, was super kind and always made sure I had something gluten free to eat. The two therapists I met were extremely competent and caring, and one of the nurses, R_____, was really on top of things. In general, everyone seemed to want to be helpful, and for that I was thankful.
However, the other nurses, the doctor, and many of the techs were all very basic and I was disappointed at the quality of care that came from them. I never met the doctor, but I had to fight tooth and nail to keep taking the meds that I had already been prescribed, some of them for years. It did not seem that the doctor had any knowledge whatsoever of my medical conditions, specifically Ehlers-Danlos Syndrome and my need for pain meds or Mast Cell Activation Syndrome and my need for histamine blockers. I would have been happy to talk to her and educate her, but again, I never saw her. Additionally, I had debilitating migraines the first 3 days of being at Magnolia, so bad that I could neither attend group therapy nor eat. Despite this, the doctor refused to see me in person or prescribe anything stronger than Tylenol or aspirin. Additionally, one of the nurses at one point gave me the wrong meds, and then when I corrected her, gave me the wrong dosages of the meds I was supposed to take!
It only got worse….
MEDICAL EMERGENCY:
On the evening of November 19, I went to bed at 9:30 and woke up around midnight? I don’t know what time it was. I woke up crying and severely agitated (I had gone to bed stressed and upset from an earlier outing that day). When I started shaking, I realized that I was here to get help and I needed to do it before I went into a full blown dissociative seizure. So, I forced myself to crawl out of my bed and walk down the stairs. I didn’t recognize the tech sitting on the couch, and they didn’t turn around and ask if I needed anything so I thought perhaps they were asleep. I continued to the nurse’s office which was down another flight of stairs. The door was shut and there was jazz music playing inside. I knocked three times and receiving no response, I assumed she didn’t hear me or she was asleep. I went over to the couch close by because I figured someone would probably find me sooner there than if I was back in my bed.
I don’t know how long I waited. 30 minutes maybe? By that point though, I was too far gone to be of much use to anyone. Unfortunately, in these situations, I become unresponsive and my whole body increasingly shakes uncontrollably. My muscles constrict in a tight, locked position, and it is like I am paralyzed but everything is still moving. It’s terrifying because I have no control. People insist that I stop shaking and to talk to them, and I try! But I’m absolutely incapable of making my body listen to what my mind is telling it to do. I can’t open my eyes or my mouth…I have no ability to communicate. Some years ago, a neurologist diagnosed me with non-epileptic/dissociative seizures as a result of trauma. These episodes look like seizures, but my vitals are fine which really confuses medical personnel. He describes it as a byproduct of my mind shutting down when it is trying to protect itself.
It was quickly obvious that the nurse and staff had no idea what to do with me (no one else in their facilities had had dissociative seizures before – Really?) and they called the ambulance. EMS arrived and they were extremely rude and impatient with me, yelling at me to stop shaking and then saying that I was causing a scene and because I wouldn’t respond, it was my fault that they had to take me to the ER. The nurse did not give them any information at all on me (neither from the records that were in the system from my assessment nor from the emergency cards I keep in my purse which they had locked away), and for the longest time, the EMS team assumed that I was in withdrawal from substance abuse and debated on whether to give me Narcan. I had no idea how Narcan would affect me or interact with any of my other medications and I remember just feeling so afraid that I was just going to die because someone was going to make a dumb mistake that could have been avoided. Eventually, we made it to the hospital, and the doctors decided that I “just have anxiety” and since I was from the psych house, I didn’t need real medical care. I SEIZED for 6 HOURS before my husband was allowed to see me. At that point, the doctor gave me some Ativan (without knowing which meds I was on) to calm me down, which worked thankfully.
As appalling as this might sound, this was far, far better treatment than I received the time before when I was taken to the Emergency Room for a dissociative seizure. In that case, I could hear the doctor and the nurse standing over me yelling at me to stop shaking and tell them what was wrong. When I didn’t/couldn’t respond, the female doctor let out a disgusted sigh and said, “People like this shouldn’t be here. I don’t have time for this! I need to be working with people who actually need help!” She bent over and told me she was not going to do anything until I stopped shaking and communicated what I needed. I was in a constant clonic seizure for 12 hours before another doctor gave me morphine for the pain that I had to be in at that point (and I was). I slept for the next day and a half, and when I woke up, the only thing I could think of was how shitty I felt on the inside. I have no control over when my body does this, and yet I was blamed for making it all up, repeatedly. There’s some kind of break that happens in my mind where part of me knows the truth but there’s another part of me that is so confused and I doubt my own thoughts and my own experiences. Honestly, I think my ER experiences are more traumatic than my actual dissociative seizures.
DECISION TO LEAVE:
Once I got home from the hospital, I had to weigh my low to moderate risk of suicide to a very real potential of one of Magnolia’s medical staff killing me indirectly by ignorance and incompetence. I determined I was more at risk for the latter, so I chose not to return to the house. I wrote a detailed letter about what happened and at the end I summarized that I was too complicated for their medical staff, and because of this, I did not feel safe being in their residential program. At best, I felt like I had been traumatized yet again, and it could have been avoided. At worst, I could have died if they had given me the wrong meds.
Despite not returning, I still recognized that I needed help and I still believed that this company offered one of the best programs for what I needed. For over a week, I made numerous phone calls to their PHP (Partial Hospitalization Program, which is a step down from Residential and Inpatient treatment), and their admissions department and I kept on being told that I needed to be in Residential Treatment and I had to be properly discharged from that before I could go to PHP. I asked my therapist for help and I reached out to the person who originally did my assessment. I began calling other mental health facilities and going through additional assessments all over again only to be told my insurance didn’t cover that facility. I sent emails begging for help and received no answers. I honestly didn’t know who else to reach out to, how else to beg, or what else to say that would convince someone to let me pay them money for help. I was beyond frustrated and just felt so defeated.
After a week and a half, my therapist at Magnolia House apparently worked miracles behind the scenes and I was contacted and told that I could start PHP within the week. I was so relieved. Finally, I would be getting the help I needed! Finally, I would start getting better. Finally, my husband would want to be with me again.
Of course, nothing ever happens the easy way, or the way that we expect most of the time.
To Be Continued in Part II…
