What I Gained From Giving Up

Lent, the holiest season in the Christian and Catholic calendar. It is a recollection of the sacrifice that Jesus, the son of God, made for us for the forgiveness of our sins. In turn, it has become a tradition that believers give up something of value or luxury during the forty days of Lent starting on Ash Wednesday (that’s the day when Catholics are identified by the ash smudge on their foreheads) ending on Easter Sunday.  The belief is by giving something up, we are offering up a reflection of the sacrifice that Jesus had done for us.

Facebook, Really?

When I became a Catholic CEO (Christmas and Easter Only), I had turned cynical of this tradition. People were giving up alcohol, chocolate, rice, and sweets. And more recently, social media. I was cynical coz Facebook? I thought the whole point of giving something up was to learn the value of sacrifice, stewardship and inner reflection. I was imposing my own biases onto another person’s values and this was unfair.  I wasn’t even giving anything up myself, I really had no place to judge.

Giving in and Giving Up

This year, I decided to embark on my own Lenten journey.  I thought I would participate in the tradition of giving up. In that spirit, I have decided to give up behaviors and habits that were holding me back or slowing me down. I needed to find a way to reconnect with myself.  

I gave up multi-tasking. For me, this is out of necessity rather than growth. I do things very slowly. And my attention span is crap. If I try to do more than one thing at a time, and I do, chances are one of those things will be ruined or forgotten. Hence, there were some burned dinners and half-written blog posts. I need to be able to complete one task before I move on to another.  I also need to stop keep feeling so frazzled because I have so many things going on at the same time. I end up with many unfinished projects. I’m also learning to prioritize and to avoid distractions. If that means doing things on a timer or on a schedule, then so be it. Trying to do more than one thing at a time accomplishes nothing and just stirs up my anxiety. Giving up spreading myself thin has been a great stress relief and a boost to my mental health.

I have given up on trying to prove myself stronger when in reality my body and brain are begging for me to stop. I have recently written about my struggle with nerve pain. While doctors are playing roulette with my meds, my nerves have gone on a wild and rowdy rave. They’ve all been lit and fired up at the same time. I have been in pain. A whole lot of pain. And because I am stubborn and hard headed, I continued to push through the pain. Mind over matter and all that. Until it got to the point that the pain had moved to my shoulders and moving had become painful. I spent a whole weekend curled up in a ball crying under the covers. I was forced to rest. It was a hard way to learn what should’ve have been a simple lesson: for my brain to heal, my body had to rest. These past few weeks I have not been going to the gym. Which really bums me out, but then I got hit the flu so yeah… I had to give up the idea that I have to be “fine” and strong all the time.   That it is okay to admit that there are moments that I am weak and that my body needs to recover and sometimes that recovery may take some time.

Summing up, I believe I could say I have given up pride. That meant knowing when to reach out and ask for help. And when to accept help when offered even from the unlikeliest source. I had a woman come up to me today and asked when I had a stroke. Then asked if she could say a prayer for me. There was a time when I would have been weirded out by this, but this time I said yes with an open mind and an open heart. I prayed with her. I cried. I felt a certain lightness.

As we celebrate Easter, I hope to continue to “give up” on the negative habits and thoughts that weigh me down. I could only get stronger when I embrace my weakness and learn to grow from them. I hope to continue to gain insight, understanding, and acceptance of my own limitations but still be able to push through them without causing harm to myself.

monika-grabkowska-612622-unsplash-1719544008-1555741180980.jpg
Happy Easter!

Embracing the New, Challenging the Old

So here we are in mid-January and I’ve already breached my new year “resolutions” list. I admit I am was of those people who say “ I don’t do resolutions, I come up with action plans!” 

My “action plan’ for 2019 looks kinda like this:

    • Go to bed early so I can get a better quality of sleep: But I keep getting drawn into Garcia’s computer hacking wizardry and snappy comebacks. And yeah, there’s  SSA Morgan…
    • Learn mindfulness and meditation. I’ve got the audiobook and ebook downloaded. I am listening to a mindfulness podcast as I work on this post!  Oh, wait…
    • Publish at least one blog post a week. Well, it the third week of January and this is my first one…
    •  Eliminate sugar from my diet. I’ve had great success on this one the last few months of 2018. I avoided juices, cookies, soda, candy and pretty much anything with added sugars to it. I survived Halloween candies and Thanksgiving pies. I felt great and had been told I look good too. Those were motivation enough to keep avoiding sugar. Tiramisu was the evilness that grabbed me by my ankles and dragged me back to the world of Wonka. I quit cold turkey last time. That might be the way to go again.
    • Wake up early and plan a productive day. See number 1.
    • Learn something new or improve on an old skill. I will try my hand on calligraphy again. Or perhaps learn the ukulele? Youtube, here I come!

This past holiday season was a tough one. The pain of losing my mom earlier in the year is still fresh and quite raw.  I chose not to attend our extended family party this year. We have a tradition of taking family photos and I know that it would have been emotionally too painful to not have my mom there. My boys were quite busy with their own activities that we missed going to Christmas at the Park which was an annual tradition. The boys have for a few years now, abandoned waking up before dawn to open Christmas presents from Santa. Although this has been quite nice not to get up at 4 a.m after wrapping presents from Santa til 2 a.m.  It is also a sign they’ve lost their childlike wonder.

family photo, Christmas, family
Family photo from 2017

These changes could have had me curled up into a ball or roll with it and grow with the changes. This new year will be a time to foster growth and challenge and change old habits that hinder that growth

Here I am rolling along. Armando and I have come to slowly accept that our boys are growing up and are forging their own identities and will someday form traditions of their own.  As a couple, we have to adjust to this new reality and create new traditions for ourselves. 

While I am not making great progress with my goal list, I am taking small steps to achieve them. And as I have learned, small steps lead to big changes.

    • I make a daily to-do list: Seeing things checked off gives me a sense of satisfaction and crumpling up the list at the end of the day makes me weirdly happy.
    • I use a timer: It seems simple, but it works! I set a timer while I journal, when I write a blog post, and while I read. I’ve made it a goal to read a non-fiction book for 30 minutes a day.
    • Reduce distractions: No T.V until I am done with all of my essential things on my to-do list. I am also working to reduce my use of social media.
    • I am setting reachable goals daily: I take into consideration my physical and mental limitations, while also stretching them out to make better progress.

Cheers to the New Year! Here’s to making progress, achieving new goals and celebrating success.

Do have tips you can share for maintaining resolutions and meeting goals?

 

 

 

 

 

 

First Trip and an Ambulance Ride

 

This past Saturday was supposed to be a nice, quiet day. We went to my aunt’s surprise 70th birthday party, had tons of food and enjoyed some family time. Once home, we all decided to do our own things. Scotty had a birthday party to go to, Vincent was passing time playing video games before he picked up his girlfriend. Armando had gone to see Star Wars:Solo.  I decided to clean the closet in the office. I have been in a purging mode lately.

So there I was emptying bags, sorting things out for selling, recycling or trash. I was about to throw out an old box when I felt something in it. It was a piece of medical THC in candy bar form. I would make a sucky addict coz I had completely forgotten about my “stash”.  I’ve had some of the candy bar before, but just small pieces and all it did was help me sleep. I had just taken my evening meds, and my dumbass decides to have some “candy”. I have never been high (shocker, right?) so I thought maybe I’ll try a bigger piece (about the size of a Hershey’s square) than I had taken before. It took awhile to kick because I kept cleaning and organizing.  Then whoa! The tunnel

Only a real friend would text something like this.

vision kicked in. I did not know what was going on, so I sent a friend a text “what does being high feel like?” We texted back and forth, then everything got fuzzy. It was as if I just off a tilt-a-whirl, while blindfolded with sheer gauze and then given a few shots of tequila. I remember going to the kitchen to get water thinking that would help. I started to panic. I was home alone, I remember looking for the rest of the candy bar to show the medics in case I was overdosing (yeah, yeah I know…). I called Armando to ask him to come home. I was scared. All he heard was the slur in my words and he rightfully panicked. 

I was fighting hard to stay awake, when the medics rushed in all I heard were “stroke”, “survivor”, “smile for me”  “lift your arms”. They were assessing for stroke symptoms.  There were so many things happening all at once. I was screaming for Armando, I was screaming for my kids. In the ambulance, one of the medics was inserting an IV  line says “this is just a little prick” of course I responded with “that’s what she said”.  I truly do not remember the rest of the ambulance ride. I apparently kept saying I was in a time loop or I was detached from my body. I think I said “it’s a good thing I am wearing nice panties.” 

When high, take a selfie!

In the hospital, They ran me through a CT scan which thankfully did not show a stroke. Armando later told me I was saying stuff like “don’t put me on life support” “this can’t be happening again” and “I’m in a time loop”.  I told one of the nurses he looked like Chris Pratt.

At some point, I must’ve told them that I had THC. Armando, understandably was pissed and relieved at the same time. The boys thought it was funny and asked why didn’t I share. My sister was there too.  I had just put my family through an ordeal we all just dealt with a few months ago with my mom’s stroke.  

I kept going in and out of moments of lucidity. I would close my eyes and wish that when I open them, I would be at home in bed.  I remember asking the doctor “this is the real world, right?” A nurse asked me if someone slipped me something at a party. I told him, the party was for my 70 year old Aunt, and we came home at 2 P.M. Reality started to come back, slowly and then with a vengeance.  The doctors and hospital staff definitely changed their attitude once they learned I had used pot and not had a stroke.  It went from caring and compassion to that of annoyance and irritation. At 4:00 AM, they sent me home.

I feel so much guilt, shame and embarrassment  from this whole incident. I have profusely  apologized to my family for what I have put them through. I honestly do not think I could apologize enough. 

I had high hopes (no pun intended) for pain and spasticity relief through THC. That unfortunate first trip caused me to be put off trying it again.  

Much Love,

Momma Berna

Disclaimer: This piece is based only from my experience. I neither condone nor condemn the use of marijuana.

Low Heels, High Expectations

I love shoes. I would switch between sexy heels and sweaty running shoes.  Nowadays, I live in Tom’s canvas shoes and since it’s winter, I get to wear boots with the fur (enjoy that earworm. You’re welcome 🙂 )

My husband and I were invited to a birthday party. I wanted to get all dressed up. I ordered myself a form fitting dress and feeling brave, I picked up a pair of not so high heeled sandals. I practiced walking around the house and I did fairly well. I was able to keep my balance and my left foot felt strong.

The day of the party came. I got my hair and face done, squeezed myself into my dress and strapped on my shoes. As an afterthought, I had my husband bring a pair of my trusty canvas shoes.

We got lucky and found a parking spot about a block away from the restaurant and club where the party was happening. By lucky, I mean we had to drive around downtown for an hour where every parking structure and over priced lots were full.

 Walking on the sidewalk  is a whole different ball game than walking around the house. I was very, very wobbly.  I was grabbing on to my husband’s arm as if my life depended on it. It did. I was trying to walk gracefully, but it was not happening.

As we walked in the restaurant, a few people were staring. Looking at my feet, looking at me and shaking their heads. Since I really do not have any visible damage from the stroke, wobbling the way I did and having a death grip on my husband made it seem like I was drunk. I knew people were looking and judging. I kept walking knowing I have good friends, good food and good champagne waiting.

I headed to the bathroom after dinner, my foot at this point was done.  Walking really poorly, I managed to roll my ankle and I heard a slight pop. Panic set in and I was leaning on my husband not wanting to put weight on my foot. That was when two young women walked out of the bathroom.  They stared, whispered and giggled. I was visibly upset thinking that I had sprained/broken my ankle. Armando led me to one of the chairs in the lobby and the two young women were standing by the elevator still giggling, phones out. I’ve had enough. I told them loudly “I am not drunk” (which on hindsight made me sound like a real drunk).  I was about to tear them a new one, but my husband stepped in and diffused the situation. I was in pain and I was scared that I had broken my already weak ankle that I have been working so hard to get stronger. I was upset that there are people who would laugh at another’s suffering.

What happened to kindness, empathy or sympathy? Was I expecting too much? I was obviously in pain and was distraught and the young ladies quite possibly were sharing my situation on their social media. When have people become desensitized to another’s pain that instead of offering comfort, they offer social media fodder. The amount of “likes” and responses validates the poor behavior. I got over the judging looks and whispered remarks, heck I know I looked drunk and wobbly. What bothered me is that there are people out there who callously would laugh about someone else’s pain. Finding validation for bad behavior will only encourage those young ladies to find their next “victim”.  There were many opportunities for someone to show kindness that evening.  A kind word or a sympathetic smile would have been sufficient.  

laughter, expectations, party
Still Standing

Thankful that I brought my reliable Tom’s and my foot was not broken, I was still able to hobble and I still looked hot (or a hot mess)  at the party. It was AH-MAY-ZING!!! The music was heavily 90’s and the dancing was fun. Drinks were flowing and the company great. Lots of laughs and shenanigans ensued. One of the advantages of having a crappy short term memory is that I temporarily forgot about the ugliness at the restaurant and I enjoyed the party!  My husband and I had a much needed night out. 

Hope the New Year brings you joy, love and kindness!

Much Love, 

Momma Berna

high expectations, low heel,
The Aftermath
Bad Shoes
The evil heel!

Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday.  In the spirit of gratitude, I’d like  to give a

online shopping, friday, gratitude
How I Black Friday.

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.
    1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me.  The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7.  He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends.  Time when they can just breath and relax without  having to worry about pain levels, medications or cutting up food. 

3. Encourage them to join a support group.  As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want  to get back to our normal lives and to be able to do things on our own.  Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do!  Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know.  But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly.  This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like?  Please let me know in the comments!

 

Much Love,

Momma Berna

My Year of Running Virtually

I have been an ambassador for a local running club three years in a row.  Represent Running is a group which promotes running locally, meeting and running with awesome people and promoting 3 Bay Area races in three different, but equally beautiful cities: San Jose (408k), San Francisco (415k) & the East Bay (510k).  Each race highlights the beauty and culture of the city it is representing. My job as an ambassador is to promote the races, spread running joy  and discounts on social media. In the past years, I have been able to  to run/walk the races “live” meaning I am there at the event toeing the start line along with everyone. Unfortunately for this year, I was sidelined for all three of the races! I had to run the races virtually – This type of virtual running does not involve virtual reality glasses while sat on the couch. 

The 408k ( 8k-4.9 miles) is my favorite local race. After all it represents San Jose, runs through downtown and local neighborhoods. Accentuated by the Mariachi mile at around the 4 mile mark. The finish is at the tony Santana Row where area restaurants lure in finishers with bottomless mimosas. The week of the race I was struggling with vertigo. Staying on my feet made me incredibly nauseous.  I was hoping the symptoms would go away that weekend. Vincent & I picked up my bib at Santa Row.  We walked the Row for a bit, but after a couple of stores I thought I was going to hurl on an overpriced shawl (tbh, I probably felt sick about the price too). I was feeling optimistic so I got my race gear ready, set my alarm and went to bed early with hopes that I would be able to stay on my feet next day.  Unfortunately, when i got up on race morning, I felt like I just came off a triple loop roller coaster instead of my comfy bed. 

The 415K is the San Francisco installment of this race series. The backdrop of this race is the Golden Gate bridge. The 12k takes runners across the bridge and the 5k runs along the Pacific Ocean. The weekend this race was on, the Bay Area was experiencing a heat wave. My silly, dumbass self thought it was a good idea to walk a couple of laps at the Relay for Life for our city.  The day of the race, I woke up with excruciating neuropathy on my foot. It felt like I was walking on hot coals.

 The 510k was the final installment of the Run the Bay series, this one is set in the East Bay.  I missed that one too, I was scheduled for cranial angiogram the next day and my anxiety was running high. 

The virtual race:

 For those uninitiated, a virtual race is where one signs up for a specific race, for a distance specified by the race but instead of joining the hundreds of people on race day, one would set their own date & location. I find running a virtual race challenging.  There are no cheering crowds, no aid stations, be no cheery faced volunteer handing me my medal at the finish line. Instead, the medal arrives in the mail and the only race photos are selfies (at least they’re free!).

A virtual runner’s aid station.

The race becomes a battle in my own head. I have to fight the voice that tells me it’s time to quit, the voice that says I don’t need to put myself through this. I could just stop no one is watching. 

I am quite fortunate that I only had to run one of these virtual races alone.  My long time friend and partner in insanity Tammy has joined me in most of my virtual races.

408k Virtual at Shoreline in Mountain View,CA

Writing this makes me sad. I am realizing that I have been experiencing setback after setback. I have not reached goals that I have been working hard for. I thought I would have been further along in my recovery.  Instead, I gave up on a 10k earlier this year. I have two more 5ks coming up before the end of the year and I really would like to do them live. 

As much as I love being an ambassador for Represent Running, I am debating if I will apply to be in next year’s team.  I do not feel that I am representing if I am not running.

 The connections between my brain and leg have not yet established my need to run. I still have to constantly remind my legs I am running. Otherwise,  I will start walking . This constant dialogue is mentally and emotionally exhausting.  

I long to run with my friends again. I want to be an active part of a running community. I will continue to work hard to get my running legs back and to get my body and mind stronger.

Much Love, 

Momma Berna

To know Me is to Understand Me

I am sure you are all familiar with “knowledge is power”.  It is a well-worn adage thrown around as part of valedictorian speeches & candidate statements during campaign season.  Commuters have been enlightened by the phrase through bumper stickers for ages.

We expect professionals to be knowledgeable in their fields. Heck we expect them to be downright geniuses at their chosen profession. This is especially true for our medical providers.

Thankfully, most of the medical professionals I have met are very knowledgeable.  They have a very good grasp of issues related to strokes & their treatment.

Knowledge is gained through education & experience. Keeping up to date with the latest information, research & constant study helps expand knowledge in their chosen field.

But just because doctors know what they are treating, does that mean they understand their patients?  

Knowing how medications work, how our bodies are supposed to work and how those meds affect our body, are great qualifications, but for me it isn’t enough. 

As knowledgeable as my doctors and therapists are, I certainly would be appreciative if they also understand me as a person. Understanding is acquired on a deeper, psychological and personal level. I would like to be treated beyond being just a  diagnosis and medical record number.  I want this because if someone understands who I am and what my goals are, we could together forge clearer path to reaching that goal.

I met with a new physical therapist recently. As we enter her office, before I even sat down her first words to me were “You know, it has been 3 years, you should not expect too much progress right?” I slowly sat down, took a deep breath and worked on not crying my eyes out. I told her “ I will run again”. To which she replied “you could always try the paralympics”.  Her words hurt and hit me hard.  Not that paralympics  is a bad thing, but up until that moment the thought of being a paralympian has never crossed my mind. I was and is still convinced that I will regain my “normal” running legs. I wish she had taken the time to speak to me first, get to know who I am and talk to me about my goals before she abruptly told me about the paralympics. It would also have appreciated a little more information about the paralympics before she sprung it on me. 

The psychologist  I saw pretty much said the same thing. She gave me the “you’ve plateaued” speech.  I made an appointment with this psychologist because I wanted to talk about my frustrations and anxieties about my recovery. The first thing I told her was “I don’t want anymore meds.” She went through her list of questions, I opened up a bit. Then she says “I’m going to set up an appointment with one of our psychiatrist, he can talk to you about maybe adding more medications or increasing your dose. I met with her wanting to have someone i could objectively speak to  regarding my fears, anxieties & frustrations about my recovery.  I did not want  someone who will medicate me to numbness.  She continued to insist on medications. I did not make a return appointment.

Hospital staff & medical professionals are short on time. They are under pressure to get patients in & out of the clinic in order to serve more people.  But taking a few minutes to ask questions, looking beyond a medical record would mean so much to the patient who you will see on a regular basis. Be a person we can trust to not judge our deficiencies and dismiss our goals. Be one who is willing to help us reach those goals. If the goals are unrealistic, please meet us in the middle and help us to get there. Stroke survivors fight daily to overcome our deficits. Although, we have support from our family and friends It really helps to have our medical professionals understand us so that all of our bases are covered.  Healing and recovery goes on much smoothly if we are well supported.

What would you want your doctors or therapists to understand about you?

Do you feel that you are able to talk to your medical team and express your needs & goals?

P.S I have been seeing the same PT, we’ve had a couple of sessions since that fateful first meeting. I believe I have shown her what I am capable of achieving. Her & I are now working hard to get me back to running!

 

Walking Universal

Harry Potter experience,Universal Experience
The entrance to magic!

July 20th 2017, my family set out on our first “real vacation” after the stroke. I was apprehensive. I used to be in control charge of every detail of our vacations, down to packing up the car for the road trip. I dubbed myself the Tetris champion of luggage packing. I was able to cram luggage for 4 people, snacks and “other essentials” in the back of the Impala (may she RIP) and now the CR-V. It is not easy to not be in control charge anymore. The boys are older and they can pack their own luggage– so what if they only pack one pair of undies– and I instructed them on how to arrange the bags in the car trunk. My anxiety was still high. What if I get sick in the car? What I didn’t bring enough meds? What if ? what if? What if I just take a deep breath and just enjoyed myself?

elevators, crowds,
One of four very long & crowded escalators.

Saturday, July 22, 2017, my sister celebrated her birthday at Universal Studios Hollywood. She booked us for the VIP tour and boy it was posh! The day started with a delicious breakfast which we almost missed coz our GPS led us astray.  After inhaling yummy pastries (sorry no pics), we met with our guide. VIP perk #1 we get to jump the line on any ride we choose! Which  was very much appreciated. It was around 1,000 degrees and the park had about a million guests that day! Our first stop was the lower studio. I had forgotten that “lower studio” meant four super crowded, super long escalator rides down.  And we had to keep up with our fast moving tour group.  I love the rides at Universal, I love thrill rides in general. But this time I was apprehensive, I didn’t know how my broken brain will react to the jostling, shaking and speed of the rides. The boys were worried that I will have another stroke if I get on the rougher (fun) rides.  I got on  Jurassic Park since I know it was pretty mild and really wet which was a plus in the hot weather.  

The big dinos were out to say hello!
Jurassic ride, Universal Studios Hollywood
Whew !!! it was wet!
Harry Potter experience
I am pretty sure I was floating

The moment i have been waiting for finally arrived! We were at the Harry Potter Experience! I was so giddy, I swear I would have floated away if Armando wasn’t holding my hand. It.Was.Glorious!!! The snow on the roof tops, the shops and the owls! And of course Moaning Myrtle was in the bathroom being her old, irritable self. It was understandable that my son was nervous about my getting on the The Forbidden Journey ride. Our guide

Hogwarts castle, magic, Harry Potter
Hogwarts:The outside was great, but inside was enchanting!

described it as fast paced, rough and with lots of flashing lights (in my mind: FUN).  The ride was UH-MAY-ZING! I would love to get into detail, but it is something to be experienced.  Yes, I went twice.

I am proud of myself for keeping up with the tour group. I am proud of my mom for keeping up s well. It was definitely fast paced. I am sure the other folks in the group were a tad impatient with us.  My mom braved the Walking Dead attraction. Speaking of, how many people could say “I was bit! I was bit” while exiting the attraction and actually walk the part!

zombies,amc walking dead,scary
The Walking Dead Attraction

I knew that going on vacation will not be the same after the stroke. I will be slower, the kids will worry and for now, I will have limitations. But I am determined that I will not be held back. I was going to rent a wheelchair for the day. I am glad that I decided against it. This was a  challenge I overcame. The heat, the crowds, the noise and the pace of the tour were challenging. We had to keep up with a group of 6 able-bodied people. I more than once considered dropping out of the group, but I am glad I didn’t. We saw places at Universal Studios that are not open to the general public.   At the end of the day, I was wiped. I could not think straight,  my leg refused to move and I felt like i had no control of my body anymore.  I knew that the neurofatigue would be kicking my ass the coming days (and it did).

I am looking forward to more vacations and more adventures.   My disability might slow me down, but it will not limit me. I admit I tire easily, I am slower and it takes longer for me to recover.  I am not ready to stop. If I am too slow for some people,  they can move ahead of me and I will hobble my way to the adventure that awaits me.

Much Love,

Momma Berna

This is Me

I promised myself I would not allow this stroke to define who I am, that a stroke was something that happened to me, not what I have become. Until I realized that there is nowhere around this. I am a stroke survivor.

I am trying to embrace this “new me”, the survivor me.  I am a much more flawed version of my old self.  Looking at me, there is little to tell you that something is wrong.  It is only when I start moving that my deficits become evident.

There are days when I feel that my head is stuck under a fish bowl and everyone is tapping on the glass. I can see people and hear people, but they are much too loud and it is difficult to filter out the voices from the noise. Being in a crowded place overwhelms me and if it’s loud, I get even more rattled. This overload leads me to becoming tired and grumpy. 

There are  days when my brain & body is my enemy.  It is as if someone made a voodoo doll of me and he or she relentlessly sticking pins and needles on different parts of my body. 

I move a lot slower than I used to. Both mentally and physically. I used to be able to come up with a smart ass remark about anything. I am still a snarky, sarcastic smart-ass my  punchline are just delayed! I move slower. Being careful of every step and just simply dealing with the heaviness of my limbs.  I slow people down and I know it can be difficult to deal with me. I try to be considerate of the people around me. The difficulties I experience are not all visible.  I can’t even put words to how I am feeling sometimes. My family and friends rally me on, but I know it can be difficult on them too.

 I have been given a journey on a road I didn’t plan on traveling.  Fortunately, I have people around me willing to share my travels.  There are many times, I have to ask. It’s not always easy and I am slowly accepting  that needing help is not a sign of weakness.

What I have discovered is that inside this broken body and brain, I still see glimpses of my old self. The funny, sarcastic, smart, strong and determined me. I think that this old me is what keeps the new me moving forward.    

half marathin finish
One week and two days before the stroke, I finished the SF Nike Half marathon (13.1 miles)

Three years ago, I was an average mom and wife, living an average life and doing extraordinary things to stay healthy. I was running 10 plus miles a week and racing 5&10ks and some half marathons on the weekends. I was an average runner who was only competing with myself.  In October of 2014, I had a massive stroke. I was in and out of consciousness for about two weeks ( so I was told), and when I came to, my first words were “I need to get out of here, I have a 10k to run on Thanksgiving.” I was not aware that I had become disabled.  My legs, which took me to many finish lines and helped chaperoned many of my boys’ field trips were no longer working. My left hand and arm were paralyzed as well. That reality did not  hit me until the first day of physical therapy in intensive rehab. That was when I realized I had to learn to walk again.

This new me is cranky at worse and tenacious at best. There are days when I do not want to get out of bed and my biggest accomplishment is turning on the t.v. There are days when I feel I am ready to take on the world and in a small way, I feel that I do. I get discouraged, angry and get sad but I also know that some days I just need to put my big girl panties on and fight.

stroke suvivor, stroke survivor club, Stroke awareness

If you are reading this and you are a stroke survivor, I hope that I can offer you the information, support & encouragement you need to get through rough times. When you feel alone and  misunderstood, I hope to be able to give you company.  And hearing from you would also help me know that I am not alone. That there is a community we all can fall back to in tough and painful times.

If you are a caregiver or a family member of a survivor, know that we are very grateful for your presence in our lives. Although every survivor is different, I hope I could give you some insight into what a survivor is going through.

 

Much Love,

Momma Berna

I like Being Told “You Look Good”

I read Facebook groups and blogs for disabilities, strokes & chronic illness. I see posts where a person gets sad or offended when someone tells them “ You look good”. I know there are times when I don’t feel good, I am in a lot of pain or I feel very sorry for myself.  The last thing I would want to hear is “you look good” or “you look great!”.  

In my opinion, when someone says those words they are not meant to be empty platitudes.  Sometimes, folks just do not know what to say.  And more than anything, it is usually said with love & genuine concern. 

I am grateful when someone tells me “You look good”.

I am grateful because it takes a lot of effort for me to get ready to go out. Taking a shower can be exhausting. It takes a lot of time and frustration to get myself look presentable. I am glad when someone notices my efforts. There are days when I am in a lot of pain, and it shows on my face. When someone tells me I look good it means that for that day, at that time I am pain-free.

I am grateful because I work hard on my rehabilitation. I work my ass off to teach my brain to get back to some semblance of my old self. When someone tell me “ You look good” means my efforts are getting noticed.

thankful, grateful, stroke survivor

And I am grateful because I have family and friends who support me, help me get through the tough times and are there to boost me up when I am at my lowest. I look good because I have their love and support to carry round.

I get it,  folks with  chronic pain or chronic illness the words “you look great” could sometimes be hard to hear. Pain is hidden and for most there is no end in sight. We may look good on the outside, but the fear of when the next brain fog, neuro fatigue or nerve pain will attack is always on our minds.

Despite the uncertainty, I choose to be grateful. I choose to see the good intention behind the words. I would like to think that when a person tells me that, he or she means it sincerely.  I choose to believe that good health shows in face and my person. I will say thank you to anyone who sees this and care enough to let me know. 

Have you found gratitude in an unusual place? Please share!

 

 

Much Love,

Momma Berna