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.
One day, I was struggling to put on a pair of high top shoes. My toes were curled up, my foot would not move. I was getting very frustrated. Armando, sensing my frustration asked, “why do you keep using those shoes if it’s too hard?” . At that moment, all I could say was “because they are cool”.
Later that day, I had more time to chew on the question “why do it if it’s too hard?”. If I don’t do something because it’s hard, I won’t be doing anything at all.
Many of the things I do are difficult. Taking a shower, getting dressed, cooking and going up the stairs are just a few examples.
Resilience in the face of resistance
The American Psychological Association (APA)defines resilience as “the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress — such as family and relationship problems, serious health problems or workplace and financial stressors. It means “bouncing back” from difficult experiences”
Stroke recovery is not linear. There are moments when I feel victorious, conquering every obstacle that comes my way. I have celebrated small victories like being able to use a can opener and making dinner on my own. Sometimes, all I could do is get out of bed.
My own brain tried to kill me and now it’s sending the left side of my body false messages: No, you can’t bend your leg, no you cannot use your fingers separately. So, everyday my job is to retrain my brain to how to properly communicate with my body. The resistance is sometimes hard to fight. But I plug along everyday.
I get frustrated, depressed and angry. I’ve had goals met and goals I just wasn’t able to complete. I have cried myself to sleep too many times, my poor husband is probably thinking I am slowly losing my mind. Then I wake up the next day, if ever so slowly I get up and out of bed and face my challenges head on.
Resilience for me is not a choice, it’s a necessity. I can have a positive outlook on everything, but without having the ability to recover from setbacks, positivity will not be very helpful. Resilience allows me to learn to adapt & adjust, reset my goals and start over. Resilience what prevents me from wallowing in failure.
I would like to think that I have always been a bad ass bitch able to bounce back from anything life throws at me. Alas, I was not. I was a hot mess of self-pity and internal loathing. I eventually found ways to gain confidence and strength. This hot mess became a hot momma. Then BAM! The stroke took that confidence away.
I had a choice: either curl up and slowly whither away or put on my (clean & pretty) big girl panties and fight this shit. Resilience is not something developed overnight.
I am blessed to be surrounded by loving & supportive family and friends. They help me keep my head up when I feel that I am losing this battle.
I have goals I haven’t met, no matter how hard I’ve tried. I have not given up on them, but I have adjusted and re-adjusted them so that my goals are manageable. Giving myself room to take a break is crucial to my mental and physical health.
The APA gives these guidelines on how to build resilience. It does not happen overnight, but resilience helps in the long run. Our lives will be fraught with changes and surprises, some good, some bad. Our lives will be affected either way. It is how we react to these changes that shapes and forms who we become. Resilience is strength from the inside. It is power we cultivate, exercise & grow.
How do you practice resilience? In what aspect of your life you feel you need to be more resilient? Let me know in the comments below.
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.
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!
In August of 2016, I opted to have a Baclofen pump implanted in my abdomen. It was my hope that the pump would help reduce the spasticity in my affected leg allowing me to run again. Of course my decision was based on more than just running. I wanted to be able to keep up with my boys, be less conscious of how I walk and gain the confidence I had lost. I understood that the pump is only a tool, and I would need to put in the work to reach my goals. And I was and am willing to put in the work. I stretched, exercised and stretched some more. I am putting in the effort to rewire my brain to recognize that my foot is actually a part of my body.
One year and two months later, I have not seen much success from the pump. I noticed small changes like my foot no longer curls up allowing me to wear sandals again (yay!), my foot now lifts completely from the ground allowing for a much easier heel to toe movement. Although it still happens once in a while, my leg no longer swings out from my hip when I walk. Otherwise, the spasticity is still high which results in my leg still feeling like it is 50 pounds heavier than the rest of my body, my knee still does not bend when i walk giving me a very awkward gait and poor balance.
One might think that running is simply putting one foot in front of the other in a faster pace than walking.HA! The biomechanics of running is complicated so I will not even try to explain, but let the experts educate you.
All my life I have been conditioned to listen to my doctor and to follow orders without question. After all, doctors know everything, right? Naah.
My email to my doctor got an auto “out of office reply” so I am waiting for him to get back so I could discuss my issue with the pump. I have been warned that the tone in my leg might be what is holding me up. Hence, the hesitation to raise the dose. I have told the doctor that I feel it is much easier to work with no tone, than too much tone. I’ve not tested this theory, but i am willing to try if I am given the chance. I am willing to take the chance. So, bring it on!
I understand doctors are cautious, I understand there are protocols to follow but I know my body. I know how far and how hard I can push myself.
The New York City Marathon is happening next weekend. NYCM is my bucket list race and it was my goal to run the 26.2 miles this year. I have not given up.
I may have overestimated the “power” of the ITB pump, but I do know that I had put in the work. And I am willing to put in more.
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.SI 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!
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.
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.
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.
Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that). So when we head to an appointment, we already some anxiety building up.
Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch. Even with the extra time, we were going to be late. I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”. We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home. I was scheduled for an adjustment of my Baclofen pump and Botox for my arm. The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!
I got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time. The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.
I made another appointment for the adjustment, keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.
Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too.
Have you had an experience similar to mine?
Does your clinic or doctor give you a courtesy call if they are running late?