Alexis Rose's Blog, page 27

Chronic Fatigue Syndrome Film Screening

I received an email today asking if I would share this information regarding a film that Jennifer Brea made called, Unrest. Below are the links and a synopsis of the film. 

Synopsis:

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

How to watch Unrest online: https://www.unrest.film/ digital

How to find a screening of Unrest near you: https://www.unrest.film/ screenings

Unrest images & media: https://www.unrest.film/media/

“Astonishing”– BBC
“Brilliant” – The Daily Telegraph
“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story.” — San Francisco Chronicle
“Remarkably intimate, deeply edifying and a stirring call to action…an existential exploration of the meaning of life.” — LA Times
★★★★★ “A sensitive, powerful documentary” that’s “compulsive viewing.” — BritFlicks
“An intimate essay” that even feels like “a suspenseful thriller” and “packs a significant emotional punch.” — The Spectator

Take a Moment

Take a moment, rest

be proud of who you are.

Fill your lungs and rejoice

that you are in a different place.

You are beautiful, as perfect

as the flower growing on the Earth.

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©Alexis Rose, Photo by Chloe Si on Unsplash

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

 

Parenting with PTSD

For most, there are times when parenting is overwhelming. Sprinkle in a newly diagnosed mental illness and you have a recipe for loneliness, isolation from other parents, depression, an enhanced fear of screwing up the kids, and an exhausting (sometimes bleak) future outlook.

Depending on the age of the children, there is a fluid process of deciding what to share, being careful not to overshare, while learning to cope with your illness. It’s important to let the children remain children. They may be old enough to help with caregiving needs, but there is a line between caregiving and placing them in a parenting or therapist role.

As I was coming to terms with my past and began to understand the effects that my trauma had in my everyday life, my world turned upside down. I felt terrible all the time, as the pain of the past oozed out in fierce emotional waves, that sometimes found me dissociating as the only way to cope.

Trying to maintain a semblance of family and what I thought it should still look like, had me feeling depressed and overwhelmed. It was hard to believe that things would get better and have a positive outlook that healing could happen.

Mental illness does not just affect one person, it affects the whole family. There is an ever-changing definition of “normal.”  My son called each stage, our new normal. He said that new scenarios that were initially confusing and scary (mom cant work anymore, cant be alone, or hop in the car to run to the grocery store) turned into regular life as the family adjusted.

Going through therapy for trauma and beginning to come to terms with a mental health illness can be a very lonely, confusing and scary existence. However, It does not have to be an alone existence. Find support!

I have had the wonderful opportunity many times to provide assistance to a mental health organization. They ask if I would be willing to reach out when they receive emails from people wondering if they know anyone with a similar diagnosis, who is also a parent and has had success on their healing journey.

Sending an email like that is a wonderful and impressive step. Although we often feel we are hanging on by our last parental thread, it is an amazing show of strength to ask for help.

I tip my hat, to people who risk asking for help, especially when it comes to parenting. It’s often hard to initially confide for fear of being judged.

I understand how frightening that can be! It was terrifying to let myself trust people enough to help me with parenting those first few years that I was in intense therapy. I knew I couldn’t do it alone. I wanted more than anything to maintain my sense of family and I needed a lot of feedback and support.

The old adage that it takes a village to raise a child was for me, ever-present while I was going through the worst of my symptoms. I learned that I had to learn to trust the process, ride the waves, and keep my eye on why I wanted to heal. I understood that in order to be the parent I wanted to be, I had to go traverse the rocky terrain of facing my past and learn to live with the effects of my trauma that manifests as PTSD.

Parenting is difficult. Parenting with a mental illness (or any illness) brings a whole new level of challenges. But an ever-changing new normal is okay, and again, we don’t have to do it all alone.

It takes a village to raise a child, it takes a world of acceptance to understand that 1 in 4 people struggle with a mental illness. With a bit of emotional support, parents with a mental illness can raise well-adjusted children. Children that one day will fly from the nest, carrying into the world a strong base of unconditional love and support.

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Photo by Peignault Laurent on Unsplash

 

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

 

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My Tender Circadian Rhythm

My tender circadian rhythm

does not like to Fall back

or Spring forward.

It feels confused and lost

in the fog.

My usual disturbed and restless

sleep now has an assistant of

early a.m. risings; 3,4,5,6

oh, forget it, I’ll just get up!

I know it’s just for a few days

and mine is not the only complaint.

But it’s 3 a.m. and I’m wide awake

feeling that irritability song rising

to a crescendo.

I’ll stumble as I wait for my

tender circadian rhythm to remember

that it’s all okay

and part of this is

the November gray.

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©Alexis Rose, image source Pinterest, visualizeuscom

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

What Do Caregiver’s Need?

I am a person who has caregiver’s in my life. I’m extremely grateful for the support I have in my life. They understand that it is nearly impossible for me to carry the weight of the effects of my trauma alone, and they bring beautiful empathy and compassion.

Lately, I’ve been pondering the question, what do caregiver’s want and need when living with, caring for, or loving a person with a physical, emotional, mental, or chronic illness? This group is often left out of the care plan. They are our unsung heroes. The friends, family and support team who, without them, we would flounder.

When I was struck with PTSD  my whole world turned upside down.  As with any illness, it doesn’t just affect me, my illness affects my whole family. My symptoms can be challenging for my family, friends and support team.  They have taken the time to learn about trauma and PTSD and are right there to help me live the most “normal” life I can lead right now. No one, ever, makes me feel that I’m a burden. Feeling like a burden is my own personal demon that I fight on a daily basis.

But what do caregivers need when living with, loving, befriending or working with a person who has a chronic, physical or mental illness?

My husband loves it when I go out of town for a few days. He has respite. People ask why don’t we travel together? Well, really, he needs a break. When I’m gone his worries are less. He deserves all the pizza, binge-watching sci-fi,  just hanging out, no worry days he can get. It’s what he needs so he can recharge. He doesn’t ask me to go out of town, but when a situation arises and he feels comfortable with my traveling companion, he encourages me to go. When I’m gone, we stay in contact every day, and he’s thrilled when I come back home,  but he needs that respite.

He also belongs to an online support group for caregivers of someone with PTSD. At first, I will admit, I was fearful that he was talking to other caregivers. I soon realized that it was my own immense guilt I was feeling and transferring to him. I felt like, I drove my husband, who had no interest at all in computers or anything to do with social media into needing support from strangers online. I quickly got over that, because he needs support.  He needs to be speaking to people who get the day-to-day challenges of living with someone with PTSD.

When I ask my family, friends, support system what can I do? What do you need? The answer is always the same, and I think appropriate. They say, “you don’t need to do anything but keep healing. You’re doing great, you are doing exactly what you need to be doing.” I believe that’s the best answer to give someone living with an illness. Our job is to cope with, heal, and live a contented life within our deficits. We have to trust our caregivers will get the support they need so they can have the same kind of happiness in life.

So, my question is: If you are (or were) a caregiver, family member, part of a support system, or a friend of someone with a physical, mental, emotional or chronic illness, What do you need?

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

A Perfect Moment

Your senses notice

the sky ablaze with color.

The sun emits a soft steady light

as it slowly sinks into the depths of the sea.

As we mark the close to  another day

we are alive with the beauty of knowing

that this is a perfect moment.

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©words and photo, Alexis Rose

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

The exhaustion of mindfulness

I have practiced mindfulness and yoga for close to twenty years now. I have had some fabulous teachers, read wonderful books and have developed some deep-rooted connections. I quietly accepted that I was the weird one, until the practice of mindfulness, meditation and yoga reached mainstream.

My PTSD struck hard nine years ago and has continued to have a huge chokehold on my life.

Post-traumatic stress disorder (PTSD) is a mental health condition that’s triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

This past weekend I traveled with my son back to my hometown. I was there for a celebratory event and the mood was light.  I was feeling fine when I was inside and socializing with family I hadn’t seen for years. However, when I had to go outside or get in the car to drive anywhere I became nauseous, irritable and panicked. I kept thinking I was carsick. My son kept saying, “you aren’t carsick mom, this is PTSD.

In the moment I couldn’t listen.  I just kept ignoring him saying, look at the beautiful trees, or wow did you see that house. I was trying to stay present, as I felt the skeleton hands of my past trying to pull me down. Whenever we passed a town where bad things happened to me, I could feel my skin crawl. If I looked down I knew I could get lost in memory. So I kept looking out the window trying to notice anything but the street signs that had me traveling down bad-memory lane.

I’m trying to convey the absolute difficulty and exhaustion of having to consciously listen for birdsong, notice the clouds, and look at my feet so I know I am firmly planted on the ground. Sometimes I can do that if I feel I’m about to get triggered. Sometimes I do that after having a flashback. I’m not suggesting that I would rather be mired down in symptoms, but there are times I would just like to just rest, and recover without having to go through the process of grounding and acclimatizing to the present moment.

Later, as my son and I were talking, he said, “It must be so exhausting for you!” I asked him what he meant. He said that most people go through the day and don’t notice the trees, their breath, those kinds of things, they just do it or they don’t. They may be stressed but their stress has to do with what’s happening in the here and now. Or nowadays people are learning to “be present” because its the thing to do. He continued, “You spend your time having to fend off symptoms, dealing with daily stress and at the same time trying to stay present so you can have some normalcy in your life.

My son absolutely nailed what daily life is for me. I hadn’t talked about it because I was just living it. This was strictly his observation. I felt validated and seen. I felt I could at least for a moment let the veneer of trying to cope 24/7 down.

It also gave me permission to talk about how exhausting it is for me to practice mindfulness. It gave me permission to grieve the loss of my meditation practice and how my yoga practice had changed so drastically.

It’s all okay because practices change. But what was once something that brought me peace, has now become a tool in my toolbox of coping. That may seem like semantics, but the intention for my practice comes from a different place now.

I’m hoping as my healing journey continues, the exhaustion of staying present will ease a bit. It will come from a place of peace and not a gnarly rope climb out of the past.

Thank you to my wise son for learning about my illness and having the insight to notice and say aloud how sometimes the practice of mindfulness can be exhausting.

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

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Lessons from a real and metaphorical mountain climb

I always used the metaphor of climbing a mountain to describe my healing journey. Then I was able to experience a real mountain climb. These are the lessons from a real and metaphorical mountain climb

The road to the trailhead is wrought with bumps, divots, potholes, and dusty uneven terrain. It is hot, cold, sunny, cloudy, ever-changing but it’s possible to start the hike by crossing a wooden bridge at the trailhead, or climb the stairs to the safety of my therapists’ office.


The air at the trailhead is cleaner, crisper, and alive with possibility and excitement. As I breathe in, my lungs are filled with clean air and I want to take deep cleansing breaths. As I begin to climb into unfamiliar altitude my lungs keep me from moving too fast and I find I gasping for air. I have to remind myself to breathe. I listen to how my Sherpa breathes and try to follow what he is doing and take slow deep breaths. When I listen to him and remember to breathe and take rest stops I am able to keep walking up the mountain.


I know there is a rocky, snow-streaked tall foreboding mountain peak just around the corner but I haven’t had the chance to get a glimpse of it yet. Then, as I round the corner I am at once awestruck by the beauty of the two mountain peaks and overwhelmed by the enormity of what I am looking at. I am determined to climb this mountain that is in front of me, to conquer my past, while keeping brave and optimistic while climbing towards the summit.


As I turn around I see a breathtaking, almost indescribable scene and I am in the middle of a cirque. Surrounded by mountains on all sides of me. A place to rest, and restore, to reflect and take the time to notice the here and now. I notice the beauty, the critters, the flora, the fauna the many obstacles that I have already overcome just hiking up this far in life and on this trail.


I start to notice the wonderful people we encounter along the way. These people are climbing for their own personal reasons but each person has goals and each person is there to help along the way. Support from others in the form of a friendly hello, or a smile or a vote of confidence to keep going. We are all on the same trail and when the terrain gets too steep or when my Sherpa needs to consult with others, he finds the right person to help along our journey.


The altitude is starting to get to me now. It has been hard work and I am starting to feel the effects of my journey. I am getting sicker with each step, but I keep telling myself, “take 10 more steps.”  I am starting to lose sight of the reason I am climbing this mountain and focusing instead on just reaching the summit.  I find I am slowly losing my ability to see the beauty around me and all I think about is taking 10 more steps and the reward will come at the top.


The rocks are so hard to climb, the switchbacks look confusing to me. I’m scared I will make a wrong turn and fall off this mountain. I am deep in the throws and committed to continue to climb the mountain, but self-doubt seeps in with each step.  I’m scared and getting sick like I felt while facing the absolute truth of my past but I am determined to keep going.


I am starting to fade quickly and then I hear the wonderful words from my Sherpa, “This is your summit.” I thought we made it to the very top. When I realize we didn’t, I felt so upset inside. I felt as if I failed myself, my Sherpa and my family. Then I hear that negative voice inside that suggests this is punishment and I would never reach the summit so I began to bargain and plead to keep going, feeling like my ability to conquer “them” was climbing those last 200 feet. Then I realized that this Was my summit. It was beautiful and quiet and wondrous and rocky and very high. I was sitting on top of the world and the view was the same here as it would be 200 ft higher.


I was beginning to feel my head get sick but I was overcome with what I accomplished in reality and metaphorically. For me, the metaphor did not break down. For me, it lived up to everything I had worked so hard to accomplish. I climbed up the rope out of the skeleton hands that have tried to keep me down!


Then I am sick! I can’t think straight; my legs won’t work the way I want them to and something deep inside of me says get down. I see the look of fear on my Sherpa’s face, I hear the tone in my daughter’s voice, who had climbed the mountain with us, and I feel the urgency as I am being led down the mountain towards safety. Along the way, climbing up the mountain I got sick, coming down the mountain there were moments I wasn’t quite sure I was going to make it. But just as the journey of the mountain is sometimes wrought with sickness and safety concerns, perhaps descending down a mountain pose some challenges too.


I was emotionally disoriented for days following the climb. I was scared because I had developed such severe altitude sickness, but I was also proud of my accomplishment. I was scared because I realized how many summits there would be in reality to accomplish before I could feel healthy. I lost sight of the fact, that I had accomplished so much already, and that each summit is a victory, no matter how high the climb. I had to fight to keep my sense of accomplishment. But fight, I did and now I understand just how many summits’ I have accomplished over the years. 

Some of the lessons my mountain climb has taught me are that it’s the beauty, fear, wonder, excitement, tears, and help that constitutes being able to say I climbed a real 14,000-foot mountain and a metaphorical unyielding mountain range. 

 

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

I am Peace

I am one with the movement of nature… I am Peace. 

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©From the collaboration, Of Earth and Sky, Alexis Rose, photographer: Shelley Bauer

Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph

Your Old Hometown

How do you go back

to your old hometown

with memories of

ghouls and goblins all around?

How do you put a smile

on your face

as you pass the trees that hold

the secrets of the night?

How do we teach our supportive ones

to empathize and validate?

To understand that seeing street signs,

telephone poles and old neighborhoods can bring

back dark memories just beyond the exits.

It’s a tricky dance and

one I have not tangoed with for many, many, years.

In our hearts, we can feel both love and fear.

In our actions, we can create a circle of gratitude.

And yet, in our minds, our dinosaur minds

the past seeps out, the truth seeps out.

I plan to experience a time of gladness

with the people, I  left behind.

The ones who deserve celebration and restful love.

The ones who stayed and are happy in my old hometown.

How would you go back to your old hometown if

you had memories of ghouls and goblins all around?

 

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Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph