Category: Personal Journey

Another Sleepless Night

As my daughter’s psychological symptoms rapidly escalate, our family is forced to confront one of the most misunderstood subtypes of OCD. This deeply personal account shares the fear, heartbreak, and hope of navigating harm OCD while searching for answers.

We didn’t sleep last night. None of us. The psychological symptoms have been ramping up at a terrifying pace over the last few weeks. I had finally made plans for old work friends to come by and decided to prepare an old fashioned English tea party with homemade scones, finger sandwiches and the works. Maybe it was too ambitious, but there doesn’t seem to be enough happiness around here lately with all the stress, so I was looking very forward to this welcome and much needed happy distraction. My son has a week off of college next week. We had been discussing taking a family trip, but i am unable to make reservations. I cannot pull that trigger and make that promise. We don’t know what the next hour will bring, never mind next week. Needless to say, I never should’ve made plans.

I found my happy place in the kitchen last night cooking everything from scratch for my get together. This is a luxury of time and energy I have not been afforded for a very long time as I have given everything to my daughter and her multitude of tests and doctor visits and her worst times at home holding her and giving her endless hope that I feel slipping away from me little by little. This is the first time I’ve ever admitted that out loud. I can feel the sting in my eyes and the lump in my throat that makes it difficult to swallow as I write this.

My daughter disappeared to her room last night. That should’ve been my first clue. She’s been afraid to be alone lately, going so far as to sleep in my bed with me because she’s terrified of her intrusive thoughts. Last night, for a few hours, she slipped through the cracks of my silent revelry. Whistling in the kitchen, I lost myself as my daughter was losing herself upstairs alone in her room.

I thought she was enjoying her evening and I had not seen that in so long that I decided to leave her alone and give her some much needed autonomy- for her and for me. I eventually texted her to see where she was and why she wasn’t in the kitchen with me. she was avoiding me.

She couldn’t be with me.

Strange.

This is not like her.

Why?

Because I’m afraid I will do something to you.

This.

This devastated me beyond description in so many ways.

My heart is broken.

We just discussed this in therapy and I thought she was doing better with these intrusive thoughts. She talked mostly about harming herself and a little about me, but she didn’t want this it’s just that her brain keeps forcing herself to think it. This is a heartbreaking subtype of OCD that can be extremely isolating to the sufferer.

She had promised to let me know if she was thinking these harmful thoughts, but ironically she was unable to come to me because it was about me. Another reasonable direction this illness would take that I had missed. How could I have not thought of that? I blame myself. I feel guilt. I want to take her suffering upon myself and take it all away from her.

She cried that she’s crazy. She’s not normal. She’s an embarrassment. She feels such shame. She has a brother that is excelling in life and she’s angry and sad that she’s making us “deal with her”.

Shes feeling rage and doesn’t know how to handle it at this point. This is new.

I’m watching my daughter spiral into madness. Her eyes show terror as she sits and trembles and whips her body so violently that I can hear her bones cracking. I remember that look in her eyes almost ten years ago pre-diagnosis in my kitchen when she couldn’t step forward towards me as I beckoned her to do so.

As we now sit in the lab this sunny Summer morning awaiting her name to be called there is silent heaviness between us. There is not much we can say to each other that hadn’t been said last night as we all cried and held each other promising we will get through this together.

When I get dressed I don’t care. What do I want to eat? I don’t care. What should I do today? I don’t care. I don’t care. All I care about is helping my daughter.

Never-Ending Hope

This unpublished post from 2019 is a snapshot of one of our darkest nights. Reading it now, I can see it was also the beginning of a journey that would forever change our lives and teach me that hope is not simply a feeling, but a decision.

This post was never published when it was originally written on October 26, 2019. Reading it again, it feels as though it happened a lifetime ago and yet, paradoxically, only yesterday. Little did I know then that we had found the physician who would become the first to help my daughter receive a proper diagnosis and treatment, allowing her several precious years of relief.

As I begin to write this blog it is only 7 pm and my daughter has already fallen asleep. She is exhausted; physically and mentally. In stark contrast to my daughter, my exhaustion is displayed in my inability to sleep and so my rant begins.

We found a new doctor to help her. He is an infectious disease specialist and a few hours’ drive away. He comes highly recommended and specializes in complex patients who have fallen through the cracks of the medical system.

Our first visit last week made us very hopeful and resulted in a multitude of tests, an impromptu visit ordered by him to the neurologist (resulting in more tests) and an intensely long drive home in the middle of the night in a nor’easter, which I was not expecting.

As the large raindrops pelted against my windshield and the wind gusts pushed my car around the highway like a bully with something to prove, my beautiful daughter fell asleep beside me in the passenger seat, curled up in the fetal position. I stole glances at her as often as I could safely pull my tired eyes from the flooded highway. I couldn’t remember the last time I had seen her perfectly still. I have not seen her not tic nor not move her body involuntarily in over a year. She moves so much these days she is in constant pain. Her tics prevent her from walking normally now. From leaning back and tensing, she has hurt her back and pulled the muscles in her neck. She is unable to attend a regular full day of high school because she can not walk forward normally any longer.

On her first visit, my daughter’s new doctor took her off of azithromycin and prescribed her cefdinir. She had taken Omnicef multiple times as an infant due to chronic ear infections and never had a problem with her stomach, from what I remembered. He stressed if she had any changes in her bowel movements to take her off of it immediately and call him. Well, that unfortunately was the case and he called me right back. His orders were to take her off antibiotics and come see him again over the weekend since her tics were becoming much more severe.

As we waited for the doctor visit, her tics are full body and constant. She is in pain. Her intrusive thoughts began again with a vengeance a few days ago. She tried to take a hot bath tonight to help relax her muscles and her mind, but she came into my bedroom tonight, wrapped in a towel, leaving a trail of water behind her, sobbing. Between sobs I can make out little of what she’s saying, but understand fully as we have been here before. “…I’m turning into her…” “…won’t leave me alone…” “… my mind is broken…”

My heart is broken for my daughter. I hold her in my arms and rock her as I did when she was a young child. I tell her she is safe and that I will never let anything hurt her, but the truth is that that is not entirely true. There is not much more I can do to help her. She is terrified as am I and we need help.

She is trapped in her own mind and trapped in her own body and both are betraying her. Neither of the two are working with her nor bring her happiness. She cannot walk, run, read, sit still, concentrate, have happy thoughts. She feels constant pain, shame, embarrassment, fear, anger, and hopelessness.

Well, I will be her hope. I will be her rock. I will love her like it’s my job…. because it is. I will never stop, never quit looking for answers. I will not take no for an answer. I will see this through until we find HER cure.

As I rocked my daughter in my arms that night, I made a promise to spend the rest of my life searching for answers if that’s what it took. She will never be alone in this fight and I will protect her with the fierceness of a mother bear protecting her cub.