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.
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?
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 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
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!
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.
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.
The Brazen Western Pacific race was my first ever 10k back in 2013. I planned on making this year’s race as my first post stroke 10k. I trained, I was pumped and I was ready. I asked my son Vincent to run this race with me.
I had trained, I walked around the neighborhood, walking up the hill and even attempting runs around the city track. Tuesday before the race, I walked/run 4 miles and I still felt good afterwards.
I posted my flat runner on social media and admitted I was a bit nervous for the following day. I was excited to do this race with Vincent. My plan was to have him run the 10k, finish get his medal and then have him wait for me at the last mile. He said “No, I want to stay and walk with you”. He gave me a boost of confidence! So we line up at the start, took the obligatory start line selfies and off we went! I decided to run intervals for this race. I did not use this method while training, but I figured it wasn’t going to make a lot of difference since while training, I run/walk anyway. I set my Garmin for a 2 min run 1 min walk. Vincent was goofing around (it’s nice to be at the back of the pack coz we had the trail to ourselves!) doing walking lunges during the walk phase on the intervals. Of course that didn’t last very long. Ha!
We kept up with the 2:1 intervals. It was 9:30 and it was already getting warm! I had lots of water in my pack so I wasn’t worried. Vincent & I were chatting and having a nice time. After the two mile mark, a very nice woman stopped me and told me how inspired she was to see me out there. She’s also had her share of health issues and she started crying, which of course set me off crying too! She ran the 10k and was on her last mile. She told me “no matter how long it takes you to finish, the important thing is that you finish!” I had her words in my head for the rest of the race. I had to finish.
My son was very impressed with the kindness and encouragement of the runners. He asked me how I knew all these people, I told him I didn’t know them, runners are just nice like that!
As we approach the turn around for the 10k, my leg started spazzing out. When my affected left leg spasms, it will kick out uncontrollably. I had to stop, stretch out a bit then continue. As with all Brazen races, the aid station was stocked with all kinds of goodies. Orange slices, candy, pretzels everything a runner needs to fuel up. I helped myself to some oranges hoping to get my energy level up again. We headed back. Vincent was getting very worried as I was leaning onto him while walking. I was determined to finish. A few runners were stopping to ask if I needed pain relief, others asked if they could get a course monitor to get help. I really must be looking pretty bad. I urged Vincent to keep walking. I was slowing down, but I wanted to finish. We were at 4.20 mi! (yes, my kid thought it would be funny to take a pic of my Garmin at 4.20)
I keep trying to convince him to continue we were so close! Mind over matter right? Focus on the finish! One step at a time. I had filled my mind with positive self talk (they didn’t work). I kept moving. I was willing my leg to move. I was literally talking to my leg out loud “swing, land on heel, roll to toe.” Since I was using my right to compensate for my left, I started having shooting pains going up my right leg. Vincent was clearly worried. It was nearing 11:30 am and the sun was beating down on us. Many of the runners could tell I was in trouble. Vincent had already asked one of the returning runners to let people the next aid station know that we neeeded help (despite my protests).
At this point, the lines of communication between my leg and brain have completely stopped. My foot was rolling over at every step, my leg was frozen and i was completely hunched over to my right. As hard as it was, it was time to admit defeat. A runner helped my son walk me to the bench. It was clear that walking was not happening. As we sat waiting for help to arrive, I was still contemplating the last mile. It was so close. I tried standing up, but Vincent held me back. I saw relief on Vincent’s face when the ranger’s truck finally pulled up and he had the a/c on at full blast.
As we were nearing the finish area I could hear Sam (the Brazen race coordinator)calling out the names of the finishers, the audience cheering and I could see the happy, triumphant faces of the runners. I was devastated. I had let myself down, my brain worked against me. I so wanted this to be a victory, not just for me but for other stroke survivors as well. I wanted my family & friends to be proud of me. I feel that I had let a lot of people down. The exhaustion that I felt from the race, did not measure up to the sadness, pain and disappointment I felt inside.
Now that a few days have passed since the race, I’ve had some time to think about what happened. Although I didn’t finish the race, I still tried my best. I am grateful to have a 19 year old son who still likes to hang out with his crazy momma. He and I got to witness the kindness of other runners who were willing to help and lend support when we were in need.
I have also received so many positive feedback and support from my family and friends. Am I still sad about this? Yes, I definitely am. I am also still experiencing pain in my hip and shoulder. My brain is still a bit foggy. Neuro fatigue takes a bit longer to recover from.
I am sad and disappointed. But I’m in no way stopping! I might lick my wounds for a few days, rest up the old noggin and come up with a better training plan. There will be another race, another 10k and I will come back!
Thank you, thank you to everyone who slowed down, stopped and offered encouragement, Advil, Bio-freeze and Gu. i know those few seconds mattered in terms of a PR.
I would like to give a special shout out to my son Vincent for putting up with me. We had nice conversations and talked about anything under the sun. He knew I wanted to finish the race, so he tried his best to give me emotional boosts and physical support. He was propping me up, urging me to keep walking. But it came to a point where he knew it was time to just stop. In his gut, he knew I could be in danger. I am grateful to him for looking out for me.
There are many things that I love about running, but the one that I really cherish is the camaraderie and fellowship among the runners. These past couple of years I have been privileged to be a part of a local running group: Team Run The Bay. This team is spearheaded by Represent Running who is the powerhouse behind these three local, fun, and well organized races: the 408k, Across the Bay 12k and 415k and the East Bay 510k.
Being a part of this group has been a spectacular experience. I’ve met some really inspiring, kind and FAST runners. I’ve been accepted into this fold of runners as I hobble/walk my way to the finish line. Hearing the cheers and applause from JT and the team as I reach the finish line, never fails to bring tears to my eyes. Seeing posts on social media from the different ambassadors, is very inspiring. I may not have most of the other ambassadors, but I feel that I know them personally (sorry for the stalker vibe). To be accepted as a ‘runner’ by this group has really been a privilege as I have not done any kind of running at all these past two years. I had rolled, walked and hobbled instead.
The last race of the 2016 Run the Bay series is happening on October 9th. Run the East Bay and represent the 510. This also completes the Run the Bay Challenge . If you had run the 408k and Across the Bay 415, this is the final race of the series where you will get the extra bling. Join the excitement of the East Bay 510k. Register here! Use code Represent2016BG for a 10% discount.
I would like to express my sincere appreciation to the Represent Running Crew for welcoming me into your fold. I have felt welcomed, accepted and loved.
I am looking looking forward to the last race of the year. And I am keeping my fingers crossed that I would be a part of the team again next year.