Connection: My Mind, My Body... Me?

(Somewhat of a follow up from "There's a Place in My Body Keeping Secrets")

"Bad things happen, but you have to move past it. Leave it behind. The sooner, the better. Or it’ll eat away at you and stop you from moving forward." — Miranda Bailey, Grey’s Anatomy

It’s 2:45am and to nobody’s surprise, my brand new sleep medication did.... Well, nothing. There’s a gnawing pain in my stomach that has only gotten stronger over the last few days, and in the middle of this night, sandwiched between yesterday and tomorrow, I feel the hints of congestion and a little bit of a sore throat. In the last 8 days, I’ve only left the house to attend two medical appointments, my daughter’s dance class and also gymnastics. I don’t know if the sore throat and the stuffiness are just visiting, or if they’ll stick around.

Are they from same germs my husband and my daughter have had, just affecting me differently?

Or am I just continually living... in a special needs body.

That’s me, trying out a new type of language.

A body that… needs special attention.

A body that needs extra consideration.

A body that is more sensitive to… everything? Food, stress, environment, etc.

I’m not sure yet.

What I do know is that yesterday’s consolidated post didn’t share some of what now feels critical to include.

My body and I have not been on the same metaphorical or physical page since 2009, more than 15 years ago. We “broke up” about a year after I graduated from college. I was four weeks into a new job, living in a new apartment downtown and I had everything going for me. I was putting down roots and exploring new places, making friends and connecting with old ones, and then the GI symptoms started. Twice during the next two months after being locked in the only bathroom on the my office floor, I was forced to take a cab to the nearest emergency room, where my parents would meet me, I’d go through a battery of tests, and ultimately be discharged the same evening with no answers. At that point, we still had hope. Food sensitivities? An ulcer? Something that came with a fix. Something that was temporary.

If only.

That was the beginning for me of what has now been a decade and a half of not being heard, not being seen, being told that what I was feeling wasn’t true or harmful or dangerous.

That was the beginning of second, third, fourth, eighth opinions, of sending my case files to hospitals in different parts of the country, desperate to regain some quality of life.

At the same time as my body fought against this invisible force, I withheld my full time job as a government grant specialist at a nonprofit agency in the city, providing aid to those who were homeless and living in poverty to obtain stable, long lasting employment. The things I remember most from those days? Needing to constantly borrow safety pins from the interview closet to keep my pants up as my weight continued to drop rapidly and incredibly unhealthily. I remember only being able to stomach a scoop of peanut butter for lunch during the day, and hoping that without caffeine I’d somehow stay awake until I got back to my apartment at night. I remember wearing tights under leggings under sweatpants when commuting via public transportation because I was freezing cold all of the time.

But what I remember most clearly from that chapter was the kindness and compassion of a colleague, someone to this day who remains one of my closest friends, who had an office with a closed door as opposed to the majority of cubicles surrounding the remainder of the staff. When I just couldn’t pretend to be well anymore, I’d walk into her office, often while she was on the phone, I’d close the door, and I’d lay down on the floor for 10 or 20 or even 30 minutes. Sometimes I just listened to her talk. Sometimes we discussed the obvious. Sometimes we discussed the arbitrary. She gave my physical pain space to exist. She gave me reprieve in a way that I knew I was cared for.

Two years later I found myself boldly moving from Chicago to Ann Arbor MI to begin graduate school - not my first plan, but the plan that worked out best. My health was questionable but more manageable than it had been, and I naively assumed it would just continue to work itself out. This was before I was afraid of my body. This was before I hated it’s dramatic shortcomings. If only I knew then what I know now…

I managed to last from August until October before I walked nearly a half mile from the School of Professional Studies into the Emergency Room at the University of Michigan Hospital located on campus, and for the first time, alone, was admitted overnight.

In December I transferred home and I transferred schools, committing to a professional program at night rather than a full day course load, leaving me sunlight hours for again a barrage of doctors appointments, medical tests, downloading my history time and time again, beginning for relief from the symptoms that had taken my life away completely.

A year and a half later, in the spring of 2013, I completed my Masters Degree, and then spent a week at the Cleveland Clinic in Cleveland, Ohio, seeing as many specialists as would agree to view my case files.

All I remember from that trip was the thickness of disappointment and the overwhelming fear that my body would have this grasp on my quality of life forever.

That was the first time I lost the will to keep going.

But, there were people that believed in me. That believed in believing I would survive, that I would in fact survive.

And I did. It just wasn’t pretty.

For three more years, until I finally heard the words Crohn’s disease, I alternated between living in bedroom, sleeping on my bathroom floor, and being frequently admitted to the hospital for weeks at a time. I’ll be forever grateful for the therapist, medication, friendships and family that withstood those years - without them, I don’t think I would’ve made it through.

That’s when the disconnect between my brain and my body started to become more permanent.

To survive, I had to live outside of my body.

Do you have any idea what that means?

At some point, I suppose, I made a somewhat conscious choice to pretend that my body wasn’t trapping me inside. That it wasn’t trying to burn itself to the ground. That it was just desperately sending flares, hoping someone noticed them. I guess, today, I realize it was hoping that I would notice them. And in fairness - I did.

My brain and my body operated separately, but my brain at least still listened to my body. It made and attended doctors appointment after doctors appointment, it advocated for additional testing, new research, new medication options, any options that would improve my quality of life.

After my first autoimmune diagnosis in January of 2016 (Crohn’s disease, or inflammation of the small intestine), a slew of other health problems followed…

• November 2016 - Rheumatoid Arthritis (inflammation in my joints)

• December 2017 - Unexplained Infertility

• March 2022 - Adrenal Insufficiency (the inability to produce cortisol, the stress hormone) Thus leaving me steroid dependent

• March 2023 - Asthma (inflammation of the bronchial tubes in my lungs)

• April 2023 - Pneumonia

• August 2023 - Inappropriate Sinus Tachycardia (when I transition too quick from sitting to standing my blood pressure drops and my heart rate skyrockets)

• December 2023 - Bacterial Meningitis (infection and inflammation in the brain, causing a fluid buildup and a skull crushing migraine)

• April 2024 - Endometriosis (uterine tissue growing outside of the uterus) leading to an ectopic pregnancy and a ruptured fallopian tube

• July 2024 - ADHD

• August 2024 - Osteomalacia (softening of my bones, causing easy breakage)

• September 2024 - Hypermobility (questionable for Ehlers-Danlos syndrome (EDS))

And along the way these things came with intractable migraines - present in childhood and then attacking with a vengeance in my 20s, the sleep disorders (I’m currently still writing to you at 3:40am), the persistent anxiety, the crippling depression, the post traumatic stress disorder, and the undeniable fear.

I became afraid to move. Afraid of germs, and for a while there, afraid of other people spreading germs. The pandemic wreaked havoc on me mentally, being immunocompromised and high risk, my life essentially included nearly 3 years of some version of quarantine.

The fear of living inside of this body for even one more minute became intolerable.

It’d be easy for me to now back up the statements above with a list of all of the medications I take each day, the daily, monthly and quarterly sets of injections I get for three different conditions, the infusions I receive every 5 weeks, the actual pharmacy filled with as needed medications I have on hand at all times, and the medical equipment that lines the walls of my closet, my bathroom and my linen closet.

But those are just stats. Facts.

They don’t explain the emotional agony of being stuck inside of this body.

Of having a brain and a heart that want to thrive to no avail.

Of being forced to look at the obstacles in front of me instead of seeing the straight line path between two spots.

I’ve never gotten to that path.

I’ve fallen just short, so many times.

What started between my brain and my body was a schism, a way to stay relatively sane without ignoring the ever growing needs of my body just to function, just to spend a day out of bed… and then infertility, IVF and recurrent pregnancy loss fractured that relationship entirely.

In April, when Rowan died, nearly taking my life too, the fracture between my brain and my body broke completely. When I gave up my dream of having a big family, of ever being able to give my living daughter a sibling, I held my body responsible for the wreckage it left behind. I burrowed deep into the spaces in my brain that hurt the least, and I stayed there for months, completely unaccessible to anyone… that be myself or anyone surrounding me.

It wasn’t until I began IV Ketamine therapy that my brain even attempted to come back online. And after more than 5 months of intensive treatments, rigorous therapy, a combination of medications and an extremely engaged care team - I’ve started to come back home to myself again.

I mean, blowing out my knee a month into treatment didn’t help anything at all. Being immobile for 14 weeks and having ACL reconstruction surgery wasn’t part of my mental health treatment plan, but that was one where I had no choice but to fix what I had broken (ruptured, torn, shredded, etx) - all within one fall.

It actually furthered my point - how could my body harm me so much when I was working so hard to return to it. To piece it back together.

I remember one day asking my therapist of the last 3.5 years if it would be possible to keep my brain and my body separated forever. If i could just exist in my brain, tap into my body when necessary, and pretend it hadn’t destroyed me a thousand times over.

She paused, and although she didn’t know what to say, she knew what I needed to hear.

It’s possible… I think… but I don’t think it’s going to help you. I don’t think that’s your best answer.

So in late December, I brought this into the Ketamine realm. I brought this to the incredible psychotherapist guiding me through this treatment, someone with perhaps the most on point instincts I’ve ever met, and I said to her - ‘okay. it’s time. we need to talk about the disconnect between my brain and my body.’

That conversation has been in the works since. And to some degree, it’s been painful every time we’ve had it. It’s not that I don’t want to reunite these things, that I don’t want my brain and my heart and my body to be in alignment. It’s just that I’m scared. I’m truly scared. Because what happens if I do all of this, and it doesn’t change a thing. What if it doesn’t make anything better? And god forbid - what happens if somehow it makes it worse?

Yesterday morning, when I read to her There's a Place in My Body Keeping Secrets, she got very honest with me.

I can keep moving through life as I have, or I can choose more for myself.

I can continue to loathe the body I’m stuck in, to fixate on the pain and the pressure and the consequences, on the systems and parts that are broken, on the medications and the doctors and the ER trips lurking just around the corner, or I can choose to my thoughts, and my intentions, and my body once again.

Honestly, I don’t know what that means yet.

Or if I’m comfortable with it.

I don’t even know if it can be successful.

But I do know that when I try to sleep again, and I wake up with this constant gnawing in my stomach more pronounced than it was when I went to bed originally, I will immediately be filled with dread of what comes next. Of the doctors, the testing, the diagnostic odyssey, the uncertainty of identification or diagnosis, and even more so, the unknown potential of whether there’s treatment to make the pain more bearable or to even go away all together.

So… she’d argue with me that there is a connection - more than I’d like to admit. That my brain can and will quickly scan my body, noting pain and hurt and discontent in places where it hasn’t been before, and it can identify what the potential problem may be, what the potential steps are towards identifying that problem may be, and what the potential outcomes of those potential steps could end up looking like.

No matter how many times I’ve walked into an Emergency Room in my life (I mean, we’re talking several dozen at this point), and no matter how many nights I’ve slept in a hospital bed (we’re probably looking at a lump sum over 200 if I had to ballpark it) - I can never be fully prepared for the physical or mental devastation of the experience, especially now with a young child at home. A child who’s very much aware when mommy’s in the hospital, when mommy doesn’t feel good, when mommy needs surgery, and when mommy has to recover.

I dont want her to know any of those things.

But this is our life.

This is my life.

And the only wish I have tonight as I see 4:10am register on my clock is that this will not be some gigantic setback, but something quick and urgent, something fixable, something that is identified and named and defined and treated, and that there are no more question marks, no more additional specialists, and no more waiting for answers. I just don’t know that I have any of those things in me anymore - mind, body or soul.