faces of stroke Archives * Survived to Thrive by Momma Berna

Low Heels, High Expectations

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

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

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

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

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

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

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

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

laughter, expectations, party — Still Standing

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

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

Much Love,

Momma Berna

high expectations, low heel, — **The Aftermath**

This is Me

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

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

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

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

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

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

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

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

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

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

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

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

Much Love,

Momma Berna

Balance:

I had just finished my balance exercises. Somehow, during the stroke my brain’s wiring got all jumbled up and balance was one of the things that got fried. This is true for many stroke survivors. So as much as I can, I have added balance exercises to my daily routine. I look kinda funny standing in a corner eyes closed, wobbling precariously. Brain rewiring is not a glamorous job.

Balance has always been elusive to me (heck, I can’t even balance my checkbook. HA) I look really funny riding a bike. My boys always teased me about getting training wheels. As I relearn how physically balance, I am also learning how to have balance in other aspects of my life. I am now a much slowed down version of myself, so planning and balance is essential. There was a time where I could get caught up in reading a book for hours. And still be able to be ready to get the boys to where they need to go. Now, I need to be cognizant of the amount of time I do things. I can spend a good of time reading, watching t.v. or surfing the internet, but those activities will not help me get better. I put in time to workout, write, work on my hand and fingers and stretching (this helps with getting my movement back). I need to once again be a productive member of society. How do I fit all of these in one day? How do you keep balance in your life?

Much Love,

Mommaberna

Stalled but not Defeated

” But man is not made for defeat. A man can be destroyed, but not defeated” – Ernest Hemingway

The word “plateau” is one that brings fear to athletes. By definition PLATEAU is to reach a state of little or no change after a time of activity or progress. But for athletes, to reach a plateau in their training means they now have the challenge of having to change up their training. For runners it might be adding hill repeats, adding fartleks to their routine or simply cross training. This are what athletes do when faced with a lack of progress. They do not see the lack of progress as a time to quit, instead it is an opportunity to establish a new routine so they can better themselves.
Apparently for some doctors, physical therapist and of course insurance companies a plateau is the time to just quit. To give up and lose hope. When i left the rehab facility, the neurologist and the psychologist both told us that I have six moths to regain what I have to regain. After the six month mark, I am just to accept whatever progress (or lack of) I have and learn to live with it. I have to admit, hearing that was scary and painful. I was not going to accept that I will be in a wheelchair forever. I was so afraid to hit the 6 month mark, that I worked hard to start walking again.

I had made a lot of progress during the first six moths,but I knew I had a long way to go. I kept working on getting myself better. There would be moments when i felt stuck. I went to my Neurologist with questions. I would ask her for ways to improve, for ways to retrain my brain.

Her response every time would be “You have plateaued. There is not much you can do.” What I heard was “The insurance company have determined that you are on your own. Good luck” What I did was researched, asked questions and worked harder. I found out about Botox, acupuncture,E-stim all of which helped. But the work is still up to me. There has been many bumps along the road. I get frustrated, I hurt emotionally and physically. But I keep going. As much I would like for there to have a “miracle” cure, I know there isn’t one. There are research currently being done on how to rewire the brain, but for now I only have hard work to count on. It has crossed my mind to participate in different trials and I probably will if I find one that I would feel most comfortable with.

If given the opportunity, would you participate in an experimental treatment?

I will keep asking my doctors questions, I will keep working hard. I have proven doctors wrong in the past and I plan on doing more of that in the future.

Much Love,

Momma Berna

The Faces of Stroke

When you hear about a person whose had a stroke what is the picture that comes to you?

Many times when someone asks me about my stroke, I get these reactions: “You are too young to have had stroke!” or “you look good for someone whose had a stroke.”

If you had asked me a couple of years ago what I think a stroke “victim” would look like, I would have said “old, wheelchair bound and frail.”

I had never pictured myself a stroke survivor. Other than high blood pressure, which I thought I had under control, I did not think I was at risk for a stroke. I lived a healthy, active life. I am learning now that stroke does not discriminate.

These are the faces of stroke: Men and women of all ages, from all walks of life. All of them fighting, surviving, thriving.

I would like to thank the men and women who shared their pictures so I can hopefully change public perception about stroke survivors.