Very Touching

When I was in the hospital, I was one of the lucky ones.

I had a lot of physical contact with my family and friends. Although I had zero motor function, I could feel everything, so I really came to appreciate the touch of my loved ones.

Despite all the tubes and wires leading into and out of my body, my boyfriend, from day one, navigated the chaos to lay beside me in my hospital bed. Both of my fathers rubbed, stretched and exercised my contracted limbs daily. My brother would hold my hand continuously and stroke my head lovingly during his visits. Before starting my daily "beauty" ritual, my mother's would crawl into bed with me for a snuggle.

I was also fortunate enough to have a family friend, who was a massage therapist.

It was just days after my stroke when he gave me my first massage. I was so ill and medicated, I barely remember it. However, the second time was weeks later, it proved to be a very profound experience for me.

At the time of this second massage, I had been hospitalized for nearly two months. I was unable to move purposefully or speak. The infections in my body were making a "last stand." You name the body part, mine was probably infected. My immune system was in overdrive;  I was fighting fevers, and had a wrenching cough.

Dealing with pain becomes routine in an in-patient, acute-care facility.  The fact is, despite clinicians best intentions, "procedures" usually hurt. For example, during my three month stay, I regularly had adhesive pulled off the most tender parts of my inner arm, IVs plunged into my bony little hands, and catheters painfully violated my orifices on a daily bases.

One particularly long night, the doctor informed me that my fever had to be brought down; it was dangerously high and affecting my heart-rate. He ordered a potentially life-saving ice bath.
I remember three over-worked, night-shift LVNs, all chatting to each other in foreign tongue, bustling around my room. Without so much as making eye contact with me, they packed my body with ice. These packs were placed behind my neck and knees, in my armpits, groin, and elbows. I didn't have control over my lungs or vocal chords yet, so all I could do was moan and whimper. That's a memory that still makes me shudder.

Painful situations, such as these, made my second massage, become emblazoned on my psyche.

During my massage, my room was made quiet. Only the soft glow of the machines lit the room. Tranquil music was put on. My bed was laid as flat as my weak lungs could tolerate.
My massage therapist, Zachary, began. The scene almost seemed "normal." The massage felt so good on my tense, mostly paralyzed body. I stared at the tiled ceiling and and was overcome with emotion. My sobs drowned out the music. Big, wet, tears of happiness rolled into my ears.
I was being touched for no medical reason whatsoever. The massage was just to make me feel good, and it was amazing. I felt like a piece of my soul was being healed.

May 2014 - I ran into Zach in San Diego recently

The healing power of touch that I was experiencing was not unique. According to Dr. Tiffany Field, the premier expert in her field, and the director of The Touch Research Institute of Pediatrics at The University of Miami School of Medicine, various types of touch therapy have been shown to reduce depression, pain response, and can even increase immune function.

It seems intuitive, really. We have all experienced the positive effects of touch. It's well known that a reassuring hug from a friend can improve our mood significantly, and that holding our partner's hand can make us feel more secure and loved.

Many experts agree. For example, an experimental psychologist at DePauw University in Indiana, Matt Hertenstein, says that, "Hand-holding or hugging results in a decrease of the stress hormone cortisol." In laymen's terms, he is suggesting that touch can lessen how one's body responds to stress.

I know that what I experienced during my three months in the hospital, was NOT just physical healing. I had a truly miraculous recovery. I healed spiritually, psychologically and emotionally. I KNOW that the hugs, cuddling, hand-holding, grooming, and the massages I experienced, aided in my recovery.

March 2012 - My good friend, Frank, came to visit me in rehab

If it wasn't for my friends and family loving on me for those three months, I'm not sure that I would have ever been touched in a non-clinical way.

If you encounter a loved-one with a seemingly insurmountable situation, why not attempt to start the healing with a hug? It might not make everything "all better," but it's a wonderful place to begin the journey.

Homecoming

April 3, 2014 marks the two year anniversary of my "release" from rehab. In 2012,  I had been hospitalized for just over 11 weeks and most recently had been living in an acute rehab facility. I had just been told I was cleared to go home.  I had to transition from being a patient/inmate to a newly disabled young woman living on the "outside." That's when the real work of recovery would start.

The idea of leaving rehab should have been joyful for me, I was terrified.  I had become totally institutionalized.
I felt a flutter of panic when the rehabilitation nurse told me I could (and should) start sleeping in my own "civi" pajamas; I was going home in less than a week. My bowels and bladder would cooperate, she insisted. "You can't sleep in a hospital gown, forever."
The drill-sergeant/rehab nurse also informed me that the oral suction machine was being removed from my room. If I were choking, while brushing my teeth, I would have to figure out how to muster up a strong enough cough to clear my own airway....  I was still choking on my own saliva. 
There was also talk about removing my Gastrostomy tube. I could eat most solid foods, but the prevailing issue was liquids, the smallest amount would still send me into coughing fits. 
I remember pleading with the rehab doc and speech therapist to please leave my feeding tube in. Just for a few weeks more? They agreed. Happily, I would leave with my G-tube in place-something I never thought I would say or feel.
 

My lack of autonomy paired nicely with my injured vanity. To add insult to injury, I spoke like an unintelligible duck, I had holes in my body that didn't exist eleven weeks before and rashes on top of cystic acne, speckled with painful pustules.  My skin was breaking out, and catastrophically so. I was finally off all antibiotics, but stress, hormones, and infections were still leeching out of my pores.  I was a mess.

While I was in the nursing home, my mother, daily and diligently, maintained my eyebrows, brushed and braided my long hair, washed, toned and moisturized my skin, shaved my pits, and applied deodorant and perfume.  She even brushed and flossed my teeth as soon as I got off the vent. However, all of this was coming to a screeching halt. The physical and occupational therapists told my mom, very sternly, to back off. I was leaving rehab and would have to re-learn how to do my beauty routine without help from my dedicated mom. (who happens to be an RN, btw ).
I had to figure out how to be an adult woman again...on my own.

I was scared. I didn't want to become a burden to my loved ones.

My boyfriend had generously invited me to come live with him.
This made me feel both loved and very nervous. I felt pressure  to "become normal" as quickly as possible.
He and I were both fiercely independent, and had not lived together prior to my accident.  At the time of my release, I barely had the dexterity to dress, feed, and groom myself; I needed a walker to totter about.
I needed help all the time and with everything. I hated to admit that I needed supervision, like a child.
This fact translated into the horrifying realization: when I did go home, the many basic life skills I lacked would fall on my young, newish boyfriend; he would be in charge of helping me put a bra on, getting me safely in the tub, and slowly walking me to toilet in the middle of the night. That's about as unsexy as it gets, folks.

I was so overwhelmed. I had no idea what I was up against, but I knew it was going to be hard. I just had no idea how hard.

A stroke changes the "wiring" in one's head so severely and quickly, one cannot prepare.

I had been an independent, sarcastic, out-spoken, wanna-be femme-fatal, before my stroke.
What the hell was I now? A girl who was scared to get out of her hospital gown and who had a SUPER unreliable bladder? Beautiful.

I was sure my boyfriend and I could do it; have the fairy-tale ending after my massive brain stem stroke.
After all, we were both stubborn, optimistic, resilient, painfully in love, and had sick senses of humor. If we couldn't pull this homecoming off, then nobody could.

What I didn't know, and what nobody told us, is that many of stroke survivors and their caregiver spouses suffer from severe depression and sexual dysfunction in the wake of  a stroke.
Although the staff informed me that MOST stroke survivors will struggle with communication, movement, and emotional lability, or some combination thereof,  what I did not know was the sheer magnitude of these issues in the real world.

Had I wanted to be an over-achiever in acute rehab, I could have taken gardening, music or substance-abuse avoidance classes, all tailored to the newly disabled. I felt as though no one prepared me for, or offered me a "class" in the interpersonal challenges I would face.
For example, one day, my recreational therapist popped into my room. She sat on the edge of my bed with a clipboard, and asked, what recreational activities, post hospitalization, would I be interested in participating? Did I like to paint? Play an instrument? Bake?

"Sex" I mumbled. She blushed, "Pardon me, honey?"
"Sex, I like to make dinner and have sex with my boyfriend after work."
"Ohh," she chirped, "oooohhh....well...let's just put down yoga."
Talking was such a struggle. I didn't want to argue with this nice lady.  I felt a post-stroke emotional outburst welling up inside. "Ok," I muttered. "Yoga."

That was the only conversation I had with a medical professional about potential intimacy issues in a post-stroke life.

Having been out of the hospital for two years has allowed me to gain a lot of perspective. People who have strokes are still human beings with human needs.  If lucky, stroke survivors get to go home and re-join the human race. They are husbands, wives, boyfriends, girlfriends, parents and children.  My story is not unique. Stroke rehab takes time and is difficult. A lot of what happens during formal rehab is messy, uncomfortable, de-humanizing and downright embarrassing...for survivors as well as their caregivers. I believe that the more the struggles of rehabilitation are talked about, the more help and resources can become available.

If your loved ones are stroke survivors or caregivers encourage them  to tell their stories. It makes a difference.

Small Reminders

The end of summer 2012 was a reminder that the world was still turning for everyone else, even though my life had screeched to a halt as a result of my stroke. Students were going back to school. Office workers were going back to the office with renewed vigor to finish up the year. Football season was starting in the bars.

I had only been out of the hospital for five months. Before I had stroked out in January 2012, I had recently graduated and been busy avoiding getting a "real job" like my peers. So, I worked in a bar. Now, less than 6 months after my "accident", I could only teeter around the house, and could barely be understood by my closest friends and family. I sounded like a really odd combination of drunk and Deaf. I was not going to be a part of ANY of the fall hustle and bustle.

Below: Audio Recording June 10th 2012 // Aimeeleigh and Chris (then boyfriend)

Many of the lasting effects of brain injuries and stroke are silent, and not easily visible: depression, loss of confidence, sexual dysfunction, emotional lability, insomnia, inability to talk, jumbled thoughts, boredom.....and fear of it all happening again. I had them all. My bilateral brain-stem infarct had also left me with more obvious problems of ataxia and speech. According to The American Stroke Association, ataxia or "Ataxic Hemiparesis Syndrome" is a "weakness or clumsiness of body". "Ataxia causes individuals to over-or under-reach for things, as well as delayed initiation, difficulty with maintaining force and rhythm, tremors and difficulty coordinating muscles."

If I moved or spoke it was very clear that "something" was not right with me. I spilled everything that I didn't drop first. As soon as I opened my mouth,  my lungs, tongue, and mouth did not work well enough with my brain or each other for me to be understandable. My friends would often guess what I was mumbling by shouting out their translations like they were on a game show. It was hilarious. I laughed hysterically, until, also because of the stroke, I cried hysterically. Often, I would pee my pants because someone guessed what I had said but he or she was so ridiculously wrong, that I couldn't stand it. FYI, An adult woman peeing her pants is a surefire way to kill the mood of any gathering. My mom said I sounded like a "drunk ET". That was generous. In fact, only my boyfriend and mother had an "ear" for my weird manner of speech. They could "translate" my mumbling to others. I really didn't know if I would ever re-gain the ability to communicate verbally on my own. How would I ever work? Further my education? Remain interesting and funny to my mate? To myself? Your voice is so much apart of yourself and who you are. Every time I opened my mouth, my self esteem took a major hit.

Below: Audio Recording June 21st 2012 // Aimeeleigh and Linda (mother)

I digress. At this point of my recovery, boredom, severe ataxia, my impaired speech and general lack of confidence were some of my my biggest challenges. Moreover, I was unemployed, not sleeping, and could not keep my thoughts from racing. I could also feel my relationship changing.  I was unable to "talk it out" emotionally and literally with my boyfriend.

So, I focused on what I could do. I could hobble to the bus stop, the pharmacy, the donut shop and the nail salon. I was like a 5'5" toddler wandering around Oceanside, California. The authorities, bus drivers and shop owners thought that I was "drunk in public" or mentally challenged. Clerks ten years younger than I  patronizingly called me "honey" and would speak really s l o w l y. Everyone was extra nice. Yet Nobody EVER asked me what happened. I just became used to being stared at. I felt like my scar could explain me, though. My neck scar made the donut-man, nail lady and pharmacist occasionally have patience with me when I mumbled requests to them.  I felt that my scar was a quick explanation to others of what had happened to me, and that it was important to my future for it to stay visible. In a way, I felt protected by my neck scar while I hobbled around the neighborhood. My trache scar gave me legitimacy. It was a badge. It was proof to others that I had survived some fairly heinous shit and I wasn't just a "weirdo".

I googled "How to darken a scar," Advertisements on laser skin resurfacing and Strivectin were the only links that populated. I had spent the last three month baking my neck in the San Diego sun, trying to fry my trache scar so it would never fade. I wanted to be sure that others would to be able to see my neck from a distance and not expect a "normal" voice to come out. The veiled shock and embarrassment people expressed when they heard my hopelessly garbled voice was always awkward. It could sometimes be broken when I pointed to my angry neck scar; it was a quick visual explanation for strangers who heard me. My tracheostomy scar reminds me, then and now, that life is both precious and precarious. My scar reminds me that miracles do happen, and that modern medicine is a very cool thing.

Today, about two years after my stroke, my trache scar has greatly faded as have many of my neurologic issues. I regularly acknowledge other peoples' trache scars and we casually compare them. People often ask me what happened. It's a "no big deal" topic of conversation. I actually see pre-stroke pics of my neck and it seems like something is missing. Like the way people talk about their tattoos, its a part of me now. I embrace my my scar, and I like to encourage others to embrace their issues and scars, no matter what they are from.

Scars mean that you won :)

P.S. I have discovered that after certain amount of time, UV rays won't continue to discolor a scar, it just effs up the skin surrounding the scar! Nowadays, I use body glitter in my trache scar if I really want to emphasize it!

A Very Merry Re-Birthday to Me!

Clearly, I should introduce myself and tell you what a re-birthday is, and why I'd like you to read and share my blog.

First,  a "re-birthday" is my way of celebrating not being dead.  

It has been 2 years since I suffered a massive brainstem stroke, January 15, 2012 to be exact. It feels as if a lifetime has passed since then. And really, a lifetime has passed.

Today is my second re-birthday. This second re-birthday has really caused me to look back over the last 24 months of my life. There are so many layers of the human experience that are part of my story now, that to sum it all up in a concise introduction seems glib and thoughtless.  But here goes.... PS. I am not a blogger.  I'm not an author.  What I am is a stroke survivor who is attempting to blog.

In anticipation of my website's launch, I have been asking everyone from mentors to casual acquaintances how I should begin unraveling my thoughts in a blog.  I feel that there is so much to cover: my stroke, my hospitalization, and my recovery.
I've been told numerous times over the last two years to write down 
my thoughts and experiences as they happened.  I never did.  For so long I was mechanically, and then emotionally unable. 
Now, to be honest, the idea of maintaining a blog is more than a little daunting.  

I feel like I have experienced an abbreviated version of the first 30+ years of my life...all in the last 24 months. And like a sauce that's being reduced over heat, every nuance and note of life has been intensified.  And if I may continue with this cooking metaphor, I've decided to "deconstruct" the last two years of my life in this blog.
With the help of my family, photos, videos, emails, social media posts, and memories, I'm going to do my best to realize my goal through this blog.

I feel like my life was spared. I don't believe in luck. You can call it fate, you can call it God, you can call it a medical miracle. 
It doesn't matter to me what others call it. What DOES matter to me is that every day that I wake up, alive, out of the hospital, and experiencing life, I feel a soft tug at my soul, reminding me that I'm on borrowed time. 
I am determined to earn this unbelievable blessing and pay it forward. I hope and believe that recounting and deconstructing my experience may help someone. This blog is an attempt to do so.

There! For those of you whom I've never met, I have now introduced myself.