First a confession. When I signed for the Downtown Dropdownchallenge, I thought it wasn’t happening until October. I would blame the confusion on my broken brain, but confusion has always been my M.O. even before the stroke so there’s that. Anyway, I received the welcome email and was shocked and kinda scared that the event was only a week and a half away. Eek!!
The fundraiser benefitsDowntown Streets, an organization which serves homeless and low-income individuals, giving them the chance to make a positive change in their lives. Living in the Bay Area, where the cost of housing is astronomical, homelessness has become an epidemic. The fundraiser is still ongoing. Any amount you could give will be helpful & appreciated.
My family was not too excited about this craziness that I got myself into. They have every reason to be nervous. The building is 236 feet high (16 stories) and I will be lowered by ropes, with no net to catch me at the bottom. I was a little nervous, but I was also confident that I would be safe. I am sure that a big company like Adobe would not allow for an event such as this if all the proper safety precautions were not taken. There were little things niggling in my head: how will I be able to hold on to the rope? Will I be able to kick off the wall to help with my descent? How high is the building again?
The “day” arrived. I read all the instructions, precautions and details. After all the waivers were signed (there were a lot of them!), it was time to put me in the harness. It was a full body harness which wrapped around my hips and upper body. I had trouble putting the glove on my left hand, my fingers were not going in the proper spots. People kept asking me, “are you nervous?” Umm duh… We took the elevator to the 15th floor, then climbed up the stairs to the roof. There was a set-up for “training”. Basically, they taught me how to control my speed, what to do if the harness locks up-the rope has a braking system that locks up if one is going too fast. The lever to lead me down the rope will be controlled by my left hand. At first, I was “uh-oh, that would be tough.” But after a couple of practice sessions, I knew I could handle it (no pun intended).
So after the five or so minutes of training, I was ready to be hooked up to the rig. I was reminded of the steps: left hand to release, right to give the rope slack, keep feet on wall and gently walk down. And oh at around 20 feet there will be a stone column and you will lose your footing. Just keep going down then return feet to wall. Yup, easy peasy! Hooked up to the rig, I was ready to climb the ledge. That was the toughest part! It was not from fear that I couldn’t get up, but my left leg would not move. I asked one of the volunteers to lift my left up for me. The view up there was breathtaking. San Jose stretched out before me in all of it’s blue, hazy glory. It’s go time! One cheesy smile for the official photographer (which will be my profile photo on social media for the next few years.) and I was off! I truly tried to enjoy the view, but there was so much stimulation happening around me. There was music, The instructions to remember, the cheering and reminders on the radio. It was no wonder that I was so tired after.
I had too much to think about and my poor brain could only hold so much info. Left hand-pull lever, right hand pulls rope. Feet on wall. Enjoy the view. Annnd…the stone column was before me. My left hand had slipped from the lever, and from down below, it looked as if I was stuck. The pros were checking in with me through the radio. I just had to readjust my grip and I was off. I had to adjust my grip a few times. My feet did not work out too well. Once I was past the column, I could not get them back up on the wall. Someone on the radio was telling me to return my feet to the wall. Sorry lady, that was not happening. I don’t know what I could have done differently. Perhaps, I need to further strengthen my core so I could easily lift my legs up. My descent wasn’t as graceful as I would have liked but hey I landed.
I was so proud of myself! I felt strong. I felt like a total badass. With my feet firmly on solid ground, I glanced up. That was when all the tears came.
I probably will do it again next year. It all depends on whether I could raise the funds. In the meantime, what’s the next crazy challenge should I tackle? Maybe skydiving. Again?
In my prior post, I talked about the ups & downs and ins & outs of public transportation while traveling with a disability.
Let us now get to the touristy part! From the books I’ve read and movies I’ve seen, it was always raining in London. No matter the season, the sky could open up and pour down. So I packed an umbrella and practiced a few bars of Singing in the Rain( Because in my head, I live in a musical). A very good friend who was in England at the time, had warned me about the heat wave. She was giving temperature updates via Facebook on a regular basis while she was there. Okay, they were more rants on how hot it was, so I took them as a warning. Sure enough it was HOT! I was slightly disappointed that I didn’t get to experience London rain. Maybe next time.
London is a beautiful city. The mix of old and new architecture was definitely something that had me in awe. The crowds and noise, especially in the Piccadilly Circus area were overwhelming. My poor, broken brain had trouble processing all of the input. People moved either too fast or too slow and for someone who has trouble with reaction time such as myself, that proved to be problematic. I eventually got into the groove and managed to weave in and out of the crowds without too many problems.
Walking on Sunshine
Or more accurately, walking on the sun. It’s worth repeating that it was ridiculously hot when we were there. We took the tube everywhere and then we walked to see the sights. I love exploring. I try not to focus on a destination so I am also able to enjoy the journey. Our first “destination” was Notting Hill. This was a perfect example of enjoying the journey, not just the destination. We were looking for a park or something that looks like a studio lot where the movie was filmed. It turned out that Notting Hill was a whole neighborhood, we were walking so fast through it, we missed what we came to see.
There were a lot of churches. All of them old and beautiful. St. Paul’s Cathedral was breathtaking! I wish we had come in, but the last mass was over and they were not letting people in anymore.
Sidebar: Armando and I were STARVING! We were looking for a pub. But all there were in that area are preppy, hipster “pubs”. So we wandered into this one restaurant. Hostess said to pick a table and when we sat down this was the center piece.
I was disappointed that there was no moat at Kensington Palace. The place is beautiful! The artwork, the furniture, and the ornate fixtures were all gorgeous! I tried taking photos, but being in a wheelchair made that kinda hard. I didn’t want to get up from the chair to take photos afraid of what other people will say. I really should not have worried about that so much.
We happen to visit the palace during an exhibit of Princess Diana’s dresses. They are beautiful and glamorous. The pictures that accompanied each dress showed a kind, beautiful and graceful Princess. I felt sad that she had missed on meeting her grandchildren.
All the Ice Cream
It was hot, enough said.
The West (End) was Won
One of the things on my must do list in London was to see a show at the West End. Our travel agent scored us great seats for Wicked. The West End is London’s historical theatre district, seeing a show there is on my bucket list. We’ve had a full day of walking and exploring Kensington Palace the morning of the show. The rushed walk back to the hotel in the heat was no fun at all. My anxiety level was quickly rising. We still had to get cleaned up and get dessed. The zipper to the dress I brought with me broke! Luckily, I had another outfit nice enough to wear to the theatre. The stress and anxiety was getting to me which caused my foot to spasm. It was hideously curled sideways and I had on open toed sandals so part of my foot was dragging the ground. Gross! It was rush hour so the train was crowded. Anxiety levels were quickly racking up. We needed to get to the theatre early coz we still had to pick up our tickets. All I had was a voucher. Once we were finally above ground, construction work and long lines to the theatre greeted us. We had queued up at the wrong spot! We were to go to the box office to claim our tickets. I believe that the ushers at the front of the building radioed our arrival to the guys out back. They were waiting for us! I was helped up the stairs, they helped with getting our tickets (they let us skip the queue) I truly appreciated all the assistance they offered. Once I realized we had great seats, I let out a nice big breath of relief. And when the show started, I was mesmerized. I’ve seen Wicked in San Francisco, but the London show was just on a whole different level. Spectacular would be an understatement. After the show, I’d forgotten all about the mishaps and missteps of the day.
The Mad Dash Tour of London
Tuesday morning, we were signed up for a double-decker bus tour. It didn’t start out well. We were stuck in traffic for a good two hours. The first stop was Westminster Abbey. I had an inkling that things were not going as planned when the tour guide announced that the scheduled 10-15 minute stop would be cut down to five minutes. I opted to stay on the bus. I knew I would not make it to and back to the bus in the time allotted. That was just the beginning!
The whole darn thing was, in my opinion, a disaster! We had missed the changing of the guards at Buckingham palace, so after watching the Horse Change Parade, the group made a mad dash to Buckingham. Holy heck! The lead flag was going so fast! Armando and I could barely catch up with the group. We stayed and took pictures at Buckingham for a good 10 minutes before the bossy tour guide rounded us up and herded us back to the bus. We had a quickie Thames river tour. The boat was speeding down the river, as the tour guide pointed out key landmarks. Blink and one would have missed them.
The highlight of this day was our trip to Stonehenge. It is incredible to witness the immense power of human determination. I mean, these big rocks have been there for thousands of years and no one really knows how they were moved there. It is believed that some of them are from 500 miles away! No one knows how or why they were built. But then, aliens.
A small city with a castle! And a rich history. We took the Hop On, Hop Off (Hoho) bus which was so much easier than an organized tour. We didn’t have to hurry to keep up with a group. We walked around Mermaid Quay, took in a boat tour and headed back to Cardiff Castle. There, we walked on the castle walls and under the walls. Which were used as bomb shelters during World War II. The inside of the castle was gorgeous! I turned on my runkeeper when we started walking at the Quay. We had walked 3.35 mi total for the day! A 5k with a castle for a finish line is a good day for me. I would definitely visit Wales again.
Good Bye for Now
Eight days were definitely not enough time to explore London. There was a lot of walking, stairs and good food. Funny story: After having fish and chips at a few pubs, I told Armando “I think I’ve had enough of fish and chips for this trip”. On one of the days, we were tired, hot and hungry. We wanted something cheap and fast and McDonald’s was the first place we saw. I ordered a fish filet and french fries. It wasn’t till later that I realized…
Armando and I had a hectic, but fun trip. I am looking forward to seeing more of the world.
We will definitely return to London. We might even take the boys next time.
Armando and I took an eight day vacation in London in July. Now, this will not be a travelogue of where to go and what to do as there are many books written about that Lonely Planet London is my favorite. I would rather talk about my experiences as I travel abroad for the first time as a stroke survivor. As someone with a disability.
Planes,Trains, Automobiles and Wheelchairs?
The first overseas trip I had with my husband after 22 years and 3 and a half years post stroke, had to include a nine hour flight. I had dreamed of going to London for quite some time, so I figure why not now? We’ve had a tough few years, so this trip was well earned.
At first, I was not intimidated by the thought of a nine hour flight. To minimize stress at the airport, I called ahead and requested a wheelchair. Admittedly, this was one of the better ideas I’ve had. Being able to breeze through security was nice, I got a good old pat down though coz I set off an alarm in the full body scanner. (duh of course I set off alarms, I’m a hottie). The wheelchair was a huge help. McCarran airport is huge! We might’ve missed our London flight if I had walked.
Our outgoing flight was nice. The plane was not full, so we had an empty seat between the two if us. I was worried that walking to the bathroom would be precarious, it turned out that it wasn’t too bad. It was hard to get up off my seat without holding on to the seat in front of me, thankfully it was vacant. I had a motorized cart waiting for me at Gatwick airport. Zoom-zoom!
The flight back was not too pleasant as the plane was fully booked. Holy crap! Who shrank the 747?? Those seats were tiny! Three in a row was a tight fit. It was tougher to get up to walk to the bathroom.
I thought about renting a wheelchair while in London and I am glad I decided against it. I would have had to depend on Armando to push me around. Visiting London at the height of a record setting heat wave would have been twice as miserable for Armando. Besides, I was prepared for all the walking. I spent spring and early summer training; at the gym, in the pool and at the track. It was great to feel as if I was “training” for a race.
We were to meet my sister for tea a few hours after we arrived. It was her birthday and she was celebrating with high tea at Fortnum and Masons . Still jet lagged and entirely out of our comfort zone, Armando & I called for an Uber pool. Welp, let’s just say that the first ride was an interesting experience. After we picked up our “pool” buddies, the driver zoomed his way through traffic. The woman who was sat at the front passenger seat started
freaking out! She was swatting at something and screaming wildly. I was worried that she was going to smack the driver and we will all die in a ball of fire in front of Harrods Department store. It turned out that she has an extreme phobia of bugs and one landed on her arm, causing her to panic. This was day one!
The next day, I was determined to learn to use the London subway system, the Tube. Armando was a bit apprehensive, but I convinced him that it would be easy to figure out and economical. I knew there will be stairs, lots of them. And not all of the stations will have elevators. I was a little nervous about getting on and off the train, but I was pleasantly surprised that the doors stays open for a bit longer than the trains I’ve been on in the U.S. Most of the stations we took were elevator free, but the availability of assistance is incredible I saw a blind man being guided by a Tube employee up the stairs. The employees weren’t the only ones who were helpful, I witnessed the kindness of strangers as they helped a family get a wheelchair down the stairs.
The one route that intimidated me was the Piccadilly Line. The elevator took us
to floor -1. The way out was the longest escalator I’ve ever been on. My anxiety was high. The crush of humanity, the noise, smells and the heat were overwhelming.
We got touristy and got in a black cab. That was an expensive tourist attraction! Lesson learned, use Uber. You get a thrill ride and get to your destination faster for a lot less!
When we went to Kensington Palace, I was offered a wheelchair, I accepted. They also had a concession price (a discount for anyone who is disabled). The wheelchair was a welcome relief. The palace was huge! Umm, yeah it was a PALACE!
Traveling while disabled/handicapped/differently abled was not easy. I had to make adjustments and accommodations to make things easier and accessible. I used a wheelchair after I left the hospital, but worked very hard so I wouldn’t need it for very long. It was awkward being in a wheelchair. I needed it at the airport otherwise we would have missed our flights and I would be completely exhausted. Since I am able to walk, I want to get up and look around, but felt that I would be judged. I know, I know I should have not cared about the opinion of others. But it was tough. It was tough to not to be in total control.
I love to travel, I love to explore and take on big adventures. I am still figuring out how to manage this new way of traveling. I am slower, I am not able to carry my own bags and I definitely slow everyone down. I have to make adjustments and my family needs to make adjustments. There is still so much of the world to see and many more adventures to under take. My family and I will continue to explore the world adjustments and all.
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
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.”
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.
Disclaimer: This piece is based only from my experience. I neither condone nor condemn the use of marijuana.
When my mom passed away, my heart broke and a part of my soul also died with her. This was thethis was the first Mother’s Day without my mom. In the past years, my sisters and I would wrack our brains to come up with a “good” present for our mom. We would come up with then reject ideas: money (she’ll just give it away), A nice purse (she has tons of them), a gift card (she has tons of stuff!). We usually end up getting her something impersonal, but felt she needed. A DVD player, Filipino movies etc. This year there was no discussion, no decision to be made. We only had one gift we could get. Flowers for her grave site.
I felt detached from everything this Mother’s Day. My sister and I didn’t even arrange to meet up. I feel that was an unconscious decision for both of us. I know on my part, I was trying to not fall into pieces. When my boys and I went to take flowers to the cemetery, it felt surreal to me. Her name has not been engraved on the headstone yet which made it feel unreal.
I still have moments when I hope that she was only on one of her church group trips. She would go with her Handmaids of the Lord group to different states. During her services, her friends shared that my mother would laugh the loudest in their group. My mom who asked repeatedly how to use “the Facebook” had posted tons of photos from those trips.
I miss her so terribly each day. Little things would remind me of what she did for us. We never had an empty sugar bowl when she was around. She knew what my favorite meals were and she made them so we can eat together. I regret that the last time she made lunch, I had gone somewhere and wasn’t able to get home on time. She called and left me a message saying she already ate coz she got hungry waiting for me.
The boys and I will miss her hot bowl of chicken mami (Filipino chicken noodle soup). That she lovingly prepares for us as a welcome home after we have gone on vacations. She would call to find out how much longer it will take for us to get home so the soup would be nice and hot when we get there.
I did not appreciate many of the things she had done for me. Caring for me after the stroke, worrying about me going up and down the stairs (she always turns on the stairwell light no matter what time of the day it was). One night, I was having a truly bad stomach ache. It was only her and Scotty home with me. I was hurting so much I was screaming. I was not getting relief from any medicines, so she turned to her time tested cure: prayer. She rubbed blessed oil on my back and tummy while saying a prayer. When she walked away to go back to her room, I called her back “mommy” and she came rushing back.
I was not a model daughter. Our relaionship was fraught with disagreements and arguements. I have hurt her feelings many, many times. I have made her cry, many times. I hope she forgives me. I hope that I made her proud.
I regret that I didn’t hug her more, I regret that I didn’t sit with her at our front porch bench when she hung out there in the mornings. I regret making her sad.
Stroke has taken so much from my family. Our lives changed drastically after my stroke in 2014. Things were finally smoothing out for us, until March 12, 2018 when a stroke took away my mom.
My mom’s death was unexpected. She was fine that Saturday March 11th. We sat around the table with my sister eating yummy pastries. She talked about going to Florida to visit her sisters (A and I had already planned on buying her the airfare as a birthday present). My boys and I had gone to a birthday party that evening and when we came home, my mom was telling us how Twinkie kept her company by sitting outside her bedroom door(what she didn’t know was that she was the one making the dog feel safe. Twinkie does not like being alone). As she was getting ready for bed, she reminded me of the time change the next day. She said good night. I said “thank you and I love you”. I don’t often tell her “I love you”, but I am glad that I did that night. She went to bed with a smile on her face.
The next day, everyone had a slow start. We ate breakfast around 11, it wasn’t unusual for my mom not to join us for Sunday breakfast as she watches/attends the Catholic mass on T.V. My husband and I were getting ready to go to the gym when we heard my mom coughing. Her coughing just sounded wrong, it sounded as if she was drowning. We asked Scotty to check on her. He was calling out “Wowa,Wowa” (the kids’ name for their grandma) and he sounded panicked so I rushed over to her room. The second I looked at her I knew she’s had a stroke. She had all the signs. Armando called 911. She wasn’t swallowing her spit, so Scotty propped her up on her side so she does not get water in her lungs.
At the hospital, the CT confirmed the stroke. She was placed in the ICU, we were hanging out with her and relatives visited. My mom was awake and knew where she was, what day it was and recognized the people who visited her. Doctors performed all kinds of tests. We were told she had an ischemic stroke and she was experiencing atrial fibrillation. They were going to keep her in the ICU for observation, but they were cautiously optimistic. That 5 A.M. phone call was a shock that still reverberates through my bones.
My mom lived with my family, so her absence is deeply felt. On one of the days leading up to her funeral, I knocked on her bedroom door before I entered. I was going in there to get the clothes she would be buried in.
On the night of the rosary and vigil, we delivered our eulogies. I kept mine short because I know I would not have been able to keep it together. Here is the eulogy in its entirety.
“Before I begin, I would like to thank everyone who came here tonight. Thank you for your support and for honoring my mom’s memory. I hope you’ve all had a chance to share stories and good memories.
Many if not most of you know of my mom’s generosity. She would give and share until she had little or non left for herself. Her favorite thing to share is her cooking. She would cook enough to feed the neighbors and she did! She cooked for her boys, she knew their favorites and would make it for them if they asked or even if they didn’t.
My mom was also very stubborn. I had asked her to stop doing her apos (grandsons) laundry, but she still did. She also cleaned up after them. It was part of her morning routine to turn off the bathroom lights and the light in Scotty’s room. She would also go in the boys’ room to make their beds, collect any cups or dishes (the boys are not allowed to eat in their rooms, so I think she did this sweep so I won’t yell at the boys.) She also did their chores and gave them money. I guess it is a grandma’s well earned right to spoil their grandchildren. She fed the cat. A lot. She also loved to buy Filipino pastries. I’ve asked her over and over to stop as it is unhealthy. She bought them anyway and we happily ate.
The one quality my mother had that I never appreciated was her strength. In contemplating her life, I now only realized the sacrifices she’s made for my sister and I. In 1989, she gave up her career as a dentist to immigrate to the U.S. Her and my dad gave up the comforts of their lives, friends and jobs so that my sister and I could have a better future. The help of generous relatives helped relieve some of the uncertainty we were facing. My mom secured a job at a semiconductor company where she worked from 6 PM till 6 AM. This job allowed us to move out of my aunt’s house and rent an apartment in Milpitas. My sister and I were both going to school and working, but not once did she ask for our financial help. She even gave me the money for a downpayment for my first car. She never learned how to drive, so when my dad passed in 1996 she not only lost a husband, a best friend and a partner. She also lost her chauffeur. I was starting my own family, so I was not available to drive her around too much. She had to learn how to take the bus. She had just taken the bus to a doctor’s appointment the Friday before she passed. She was giving me lessons on bus routes!
Her true strength came through when I needed her the most. After I had a stroke in 2014, my mother was instrumental in my recovery. I am sure that she never, ever thought that she would have to help her grown daughter use the bathroom. Or that she would have to help me clean up because I did not make it to the bathroom in time. She bathed me as I cried out of humiliation and self-pity. She had to cut up my food, help me get dressed and remind me to exercise. I know it took an incredible amount of strength for her to keep it together as she helped me build myself back up. I will never forget the look of pride she had as she watched me take my first steps. Even as I am fairly recovered, she still hovered over me. She was always hesitant leaving me alone. She would ask what time one of the boys will be home before she leaves the house. She stayed up with me when I was up till late watching T.V or writing. She calls to check up on me when I am out walking alone or when she’s out of the house and no one is home with me. My mommy protected us fiercely. Loved us wholeheartedly. Gave generously. Her life maybe gone, but her presence will always be with us.”
It has been a difficult couple of months and I am sure it will not get easier anytime soon.
Earthquakes happen suddenly, with no warning and if strong enough, leaves massive destruction at its wake. Then the aftershocks follow. Little tremblers that are just as nerve wracking as they could be signaling another big one.
I use this analogy because this is how I felt after the stroke. I get anxious whenever I get a headache or a tingling in my hands or feet. Afterall, the stroke literally caused a shift in my brain.
Post Traumatic Stress Disorder (PTSD) has always been attributed to veteran soldiers returning from the harrowing experiences of war, survivors of tragedies such as accidents, personal assaults and natural disasters. What most don’t realize is that there are stroke survivors who also suffer from PTSD.
PTSD is a psychological disorder characterized by depression, anxiety, flashbacks and/or nightmares. This study indicated that 1 in 4 stroke survivors suffer from PTSD and yet, it is not a well researched field. Stroke survivors often have huge physical recoveries to tackle, their emotional health is often put on the back burner.
When I was discharged from the rehab hospital, my family was given resources to help me recover physically. Appointments and referrals were set up for physical, speech and occupational therapy. Medical pros had to check my home to see if it was accessible to me. My family was even “trained” to help me transfer in and out of my wheelchair. They were given information on how to keep me physically safe. I do not recall if my family was ever warned of the psychological toll specially PTSD.
The stroke was caused by a blood vessel that burst which flooded my brain with blood killing precious brain cells. This according to the pros, was a direct result of high blood pressure. Armando and I became vigilant about checking my blood pressure. If it was a bit high, I start panicking- which resulted in my pressure going higher. It was an ugly cycle. Every headache was surely a sign of another stroke. I would do the FAST (face, arm, speech, time to call 911) evaluation, but would be very upset because I cannot move my left arm, the left side of my face was numb and so was my leg. It was aggravating. I took a couple of ambulance rides to the ER only to be sent home embarrassed and upset. And inadvertently scaring my boys.
I read somewhere that lifting weights could cause strokes. I immediately emailed my neurologist, my primary care physician and my physical therapist my concern. I was working with a trainer and weight training. They all told me to chill the fuck out (okay, in a very medically polite way) Mind you, I wasn’t lifting anything over 10 lbs. I could not even hold a 5 lb dumbell with my left hand. Ha!
After three years, I have managed to calm down. I still fear that a headache (which I don’t get often thank God!) is signaling another stroke. I have a nagging fear that I will have another stroke and that one will leave me in a vegetative state. These little aftershocks haunt me in my dreams too. I relive the moment I had the stroke and I wake up screaming. Will I ever be able to NOT think about another stroke? I doubt it. This is a reality I now live with.
However, I will not allow these aftershocks to stop me in my tracks. I take many precautions so that a stroke will not get me again. I eat healthy, exercise and avoid stress (yeah, that one is not happening).
For anyone reading who is a stroke survivor, please know that the fear of having “another one “ is not irrational. The anxiety is very real. Our fear is valid. Know that you are not alone.
The moment I was able to flip the bird with my left hand again felt like victory and awesomeness.
When my brainbroke, I Iost the use of my left side. The technical term is hemiplegia. It is often referred as one sided paralysis. My left arm, shoulder and hands clung to my side tightly. It was painful to even try to move. My fingers were in a closed tight fist so thst my nails were cutting into my palm. Spasticity keeps my fingers stuck together as if they are bound by a thick rubber band.
It is incredibly frustrating that very simple things are so very difficult to do. Getting dressed, eating and even holding a book became impossible (thank goodness for Kindle). I had to learn a new way of dressing myself, how to put on a bra – ladies, it wasn’t easy nor was it pretty. Getting tangled in my own bra was quite interesting.
At first, I was embarrassed to ask my boys or my husband to cut up my food. I would have gone hungry. I’ve learned to order food that does not require any cutting when I am out with friends, I did not want to ask them to slice up my dinner for me. Eating a sandwich is still tricky and messy.
I am right handed so I thought that not having the use of my left would not be a big deal. Wrong! I took for granted how seamlessly my shoulders, arms and hands worked together. I live the metaphor “with one hand tied behind my back”.
Three years post stroke, I still have a long way to go for my left hand to be fully functional. I do a lot of stretching, weight bearing and fine motor skills training (picking up small and large objects etc.).
Looking back, I have made major improvements:
I am able to tie my own shoes again! Youtube has multiple videos of onehandedshoe lacetying, but they are more complicated than I preferred. I had elastic, no tie laces which were very helpful, but I wanted to tie my laces on my own. Who knew that at my age (don’t ask), I would celebrate being able to tie my own shoe laces!
I could now keep my fingers open. This is great because: I am not hurting my own hand anymore, I could cut my own nails without someone else prying my hand open. I could get manicures! I could even cut my right fingernails with my left hand. With some modifications.
“It puts the lotion on it’s skin” that’s with my left hand on my right arm.
I am now able to use a can opener. The manual one. I won’t starve anymore. YAY!!!
I could open a bottle of wine! (this should be number one on this list).
I could turn the door knob with my left hand.
I am now able to lift my arm up to my ear and hold it there for a few seconds without assistance.
I could fold laundry (sshhh, let’s keep that on the d.l).
There are many things that are done day to day that for most of my life I have taken for granted . Just combing and putting my hair in a ponytail takes the coordinating action of my shoulder, upper arm, lower arm, hand and freely moving fingers. My husband has gotten really good at putting my hair up. He still needs to learn the fine art of French braiding, I also need to get my boys trained at this skill. I am happy to say that both of them have learned how to help me with my jewelry.
I am still wary around knives. Cutting veggies is scary when at any time my left fingers could slip right under the blades of a sharp knife.
Typing is literally a pain. Typing with one hand is slow and tedious. Typing with one hand and having a crappy short term memory is very, very frustrsting. I am using this program to improve my typing skills, right now I am up to 10 words a minute! WOOHOO!!! I looked into speech to text software, but the price tag left me…umm…speechless.
I have been stuck with the idea that using adaptive equipment means I am giving up. Lately, I am realizing things would be less frustrating if I adapt rather than struggle. I would be more self reliant if I use things that could aid me, rather than getting frustrated because it’s “too hard” do things. This one handed choppingboard is an example.
My accomplishments are small, yet they are the steps that I build on. Eventually, my brain synapses will fire up again and make new connections. It is a long, frustrating road. Imagine traffic on the Interstate during rush hour. Or for my Bay Area readers hwy 880 anytime of the day (emirite??)
I continue to hone my gross and fine motor skills. My arm and hand moves like an amusement park claw machine. Slow, unreliable and drops things when you think you’re about to get the prize.
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.
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!
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
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.
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!