By Marcy Shugert
At 34 years old, a healthy mom and devoted wife got a surprise she was not expecting!
Her life before and after the stroke – attitude is a large part of her success
I had the good fortune to meet Jen through social media from a friend of mine who went to grad school with me, Tindley Whipple Gilbert, the CEO of diggity.com, a social networking site for photographs. Jen is 34 years old, and living in Dubai, of the United Arab Emirates with her husband, Chris, and their daughter, Savannah, now age two. Jen and Chris moved to Dubai in July 2010 and have enjoyed the many treasures Dubai has to offer. Dubai is home to 2.1 million people of whom 85% are foreign born. With over 100 nationalities represented, the commonality of living away from home made it fairly easy for the Sparks to fit into their community.
Jen was an avid runner who paced herself through two full marathons and two half marathons, and stayed fit by going to a spin class once a week. Jen cooked for her family, rarely using salt, ate lots of fresh fruit and vegetables, and only drinking alcohol occasionally.
Everything was “normal,” until…
October 5, 2012 started as a typical Friday night. Jen was at a super intense, high energy spin class intended to keep your heart rate high throughout the hour-long class. After the session was completed Jen was on her way to the car when the vision in her right eye went blurry. The blurriness lasted less than a minute and then stopped so she proceeded home, took a shower, and had dinner. Shortly after dinner, Jen developed what she could only describe as “the world’s worst headache.” This headache forced Jen to the couch for the rest of the evening. Over the course of the night, it persisted so she went to a general practitioner in the morning. She was diagnosed with a migraine, something she had never gotten before, and because her vision had been impaired, even for only a few seconds, she was referred to an ophthalmologist. Jen saw one that afternoon, but the physician could only tell her was that she had dry eyes. On Monday, with the headache still painful, Jen, went back to the general practitioner who prescribed a different migraine medication, and said if she wasn’t better, she should schedule a head CT scan for later in the week.
During the course of the week Jen continued her weekly routine of caring for her daughter Savannah, grocery shopping, cooking, driving to play dates, and participating in mommy/daughter music class. She did all this while still having an excruciatingly painful migraine. By Wednesday evening, Jen was still not getting any relief from the pain medication, and was becoming increasingly concerned about her condition. Desperate for relief, Jen reached out to her ObGyn, Dr. Amir Nasseri, for recommendations on getting a second opinion. Dr. Nasseri was the first doctor that the Sparks encountered in Dubai and had learned to trust, always consulting him on which doctors to turn to for medical evaluation. After exchanging several texts and phone calls, he strongly encouraged her to go to the emergency room immediately. She agreed that if her headache was not better by the next day, she would go.
Thursday morning came, and she was still not herself. So Chris and Jen took Savannah to a friend’s house, and they went to the ER at Mediclinic City Hospital . Dr. Nasseri had called the ER physician and prepared him for the visit, as well as asked him to conduct a head CT scan and to call the neurologist.
Within just minutes, Jen lost control of her body
After an evaluation, the ER doctor agreed with the initial diagnosis of an “extreme” migraine and provided Jen some IV medication to relieve the pain. While lying down in the hospital bed waiting for the IV to take effect, Jen became very drowsy. Suddenly Jen started vomiting. The nurses rushed over to assist and recheck her condition. At this time, Chris noticed that the left side of Jen’s face looked strange. Chris asked, “What is wrong?”, and Jen was not able respond clearly, and the left side of her face was completely motionless. Chris proceeded to scramble around the ER to try to find the doctor. The doctor asked if she was allergic to any medications, and that sometimes this could be a side effect of the medicine. Chris went back to Jen’s side, where her condition was worsening to the point where she struggled to use the left side of her body and continued to vomit. Chris recalls, “It all happened very quickly.”
At is this point the ER doctor ordered an immediate CT scan and MRI to further understand Jen’s condition. While waiting for the tests, the doctor mentioned the word stroke for the first time, but cautioned that nothing could be confirmed until the tests were complete.
During the tests, Jen’s condition further deteriorated to where she was almost completely motionless. Unlike in the U.S., the family is welcome in the examination room. Chris and Jen waited for what seemed like hours to hear the results of the test. A team of neurologists surrounded a computer looking at the images of Jen’s head. After what seemed like an hour (which was really 10 minutes), the lead neurologist, Dr. Deeb Kayed, pulled Chris aside and confirmed Jen had a stroke; it was what looked like a blockage in her neck. The doctor spoke and moved with a sense of urgency, as Jen was in a serious condition and it was imperative that he contact the only doctor in the country to perform surgery to remove the clot. It was explained that this was the best and only course of treatment to prevent further damage. Tissue plasminogen activator, or tPA, was not an option because Jen’s headaches started six days before she went to the hospital.
While waiting for the doctor to arrive the neurologist shared the news with a semi-conscience Jen that she had a stroke. She had a look of terror in her eyes and struggled to get out the words “I’m a mom,” and “I’m only thirty-four.” From there Jen was wheeled into surgery and Chris was left with the unenviable task of calling her parents half a world away, telling them what had happened to Jen these past week, and that she had a stroke.
To say Jen’s parents were stocked would be an understatement. Through their screams and tears they asked, “How serious is Jen’s condition?” Chris could only advise them that the doctors were doing everything possible to help Jen, and that her parents should get on the first plane to Dubai.
While in the waiting room, the doctors came out unusually fast to speak with Chris. Every bad thought imaginable went through Chris’ mind when he saw them approaching. It was at this point that the doctors informed Chris they could not complete the procedure as Jen’s artery had irregular narrowing, and the risks were too great to proceed.
Chris reminded the doctors that this was the only course of treatment…”So now what?”
Dr. Kayad calmly said, “Nothing, we wait.” Chris responded, “How bad is going to be?” Dr. Kayad quickly said, “I don’t know, but the next 72 hours will give us an idea.”
Improvement is the only option
Jen was then placed into ICU, where she would start her recovery journey. Jen’s best friend, Beth, had joined Chris and Jen in the hospital for support. As the ICU closed for the night, Chris left Jen’s side praying that his wife would be better in the morning. He rushed home to get Savannah, who was in bed and being watched by a babysitter. That night, Chris didn’t sleep, but held Savannah as if she was Jen. Throughout the night Chris called the hospital every hour to check on Jen’s condition, and waited minute by minute until the doors to the ICU reopened.
Once he arrived, Chris was pleasantly surprised to see how alert Jen was, and in fact was starting to speak again. By the afternoon, Jen started moving her shoulder and leg. When Dr. Kayad visited, he was relieved to see Jen’s improvement. Beth visited again and Jen’s parents arrived later that evening. Their flight is already close to 24 hours but surely on that day it seemed endless and emotional. They didn’t really know what to expect when they arrived at the hospital. Jen’s dad said, “When I walked into the ICU and she knew who I was, I was able to finally take a breath.” Their daughter was going to be okay, and now it was time to heal and recover.
While she was in the hospital, a CT scan, MRI, and angiography were performed, and than a day or so later an ECG (echocardiogram) was done, too. While in the hospital, Jen’s family worked most closely with a neurologist, and also saw a neurointerventional radiologist and a vascular surgeon. Given that Dubai does not have a stroke center like you would find commonly in the US, the physicians in Dubai recommended that they consult with a stroke center in the United States on an “urgent basis”. Jen said, “Remarkably, Chris and my dad were able to get through to the Cleveland Clinic within days.”
Jen was in the hospital from October 11-21, with the first five days in ICU. In the beginning, the physicians did not know what the final outcome would be but as she grew stronger, they transferred her to a regular unit in the hospital. Jen remembers growing impatient to be moved to a regular room so that she could see Savannah who was not allowed in the ICU.
After the storm
Jen shares that it is still difficult to understand how this happened. Jen is only 34, healthy, active, not on birth control, had low blood pressure, ate well and had no family history of this type of stroke. The doctors now believe there was a spontaneous dissection in her right carotid artery running up the side of the neck. During the spinning class she took, something caused a rupture in the lining of the artery that sent a clot to the right side of her brain, impacting her control of the left side of her body.
It was discovered that Jen also has a very mild form of osteogenisus imperfecta, or weakened bones, making her susceptible to fractures, which Jen has since learned put her at a higher risk of having a spontaneous dissection.
Jen comments, “I will forever be grateful to Dr. Nasseri [because] he is the one who pushed me to go to the ER and had the proper doctor’s waiting for me…all because I sent him a text. Had he not pushed, my stroke would have probably occurred when I was at home alone with my daughter and I would not have received treatment as quickly.” He truly went above and beyond in taking care of his patient and thankfully recognized the sign of something significant being wrong. Jen even recalls that he was the first doctor her parents had communication with before they boarded their flight to Dubai.
Jen started physical therapy once she was moved out of the ICU and continued as an out-patient until January. Now she is able to do most of her physical and cognitive therapy on her own at home. “Repeating everyday actions and movements is helping my brain make new connections.” Seven months after the stroke, Jen continues to work with Dr Kayed. She had an MRI and CT angiogram done recently. Jen explains, “My CT shows the dissection has healed in my artery and my MRI looks as it should, given the circumstance. It is my new normal.” Now, Jen can be taken off the blood thinners and begin running again! A huge feat (pun intended!).
Support comes in all shapes and sizes
Family and friends’ support has been invaluable. Jen’s husband is her “rock.” She goes on to say, “[Chris] has been by my side since Day One, holding my hand, wiping the tears and giving me a push when I needed one. He has always been my number one supporter and advocate and this addition to our adventure has proved no different. ” She went on to say that both her family and Chris’ family has been very supportive. From when she went into the hospital October 11th, her parents were on the first flight from St. Louis and were able to stay several weeks. When they went home, her mother-in-law and sister-in-law were there to help with day-to-day activities and for Savannah. Jen recalls, “We were fortunate that we had family with us while I adjusted to this new lifestyle. While they were here, I had to prove to myself and them that I could care for myself and Savannah while Chris was at work…that was quite an incentive.” With family help, Jen was truly able to focus on her recovery. Jen is also incredibly grateful to their Dubai friends. She finds it remarkable how quickly they were there sitting with Chris in the hospital, helping with Savannah, taking care of driving responsibilities, providing meals, and visiting Jen in the hospital. The Sparks’ friends and family in the US were also remarkable, sending their prayers, well wishes, phone calls, meals and care packages. “We are truly blessed to be surrounded by so many amazing people and so much love.”
And Savannah, an angelic toddler, has been contributing without even realizing it. Jen made a decision early in her recovery that “this is not what Savannah will remember.” Jen reminds herself of this on even the most frustrating days and continues to push herself. Jen comments with wonderment, “[Savannah] learns new things everyday, [and] as she learns I force myself to relearn. “I have to…for her and our family.” With her unknowing help I have relearned the ABC’s, several nursery rhymes and am able to work on my left hand weakness and clumsiness by playing with her and with her toys.” Who would have thought that a little girl could have so much influence on her mother? That is part of the gift.
Living life differently…and listening to your body
Jen was a very active person before the stroke, keeping busy with her family, exercising, eating right, and enjoying the excitement of discovering all that Dubai had to offer. Even though Jen continues to try and keep that pace, she now knows when she is feeling tired, it is okay to take a nap when Savannah goes down. Jen said, “I have never really liked taking naps, but I can now recognize that my body just needs rest.”
Since the stroke, Jen continues to get almost daily headaches. Jen makes the comment “they are nothing like they were with the stroke, but still persistent and nagging.” The neurologist believes they are a side-effect of the brain attack and that there is nothing active causing the headaches. She continues to treat them with Tylenol and at the recommendation of her doctor’s has an appointment for acupuncture.
When I asked her how she monitors her workouts now, Jen replied, “I have been walking for exercise, at the recommendation of my physical therapist since December. I try to walk on the beach whenever I can as it has helped improve my balance (which was affected in the beginning). I am not monitoring my exercise at this time, except to listen to my body.” Listening to your body means knowing when you have reached your limit – and you know it when it happens to you – you don’t have the same level of energy to speak, think, and do the things you perhaps would have before the stroke happened, no matter how much you try. Listening is one of the most important aspects of a great recovery.
How the body feels now
People sometimes say that the disability can be on the inside, meaning they look perfectly normal, but they may have some cognitive issues that people can’t acknowledge passing by. Jen also commented on her non-dominant left hand, and how it “could be described as weak [or] clumsy…but it is no longer a claw.”
“In the beginning I had to really think about many movements,” Jen recounts. “For example, how to put my hair in a ponytail us[ing] my left hand, and how to run [with the right side being stronger]. My balance was also impacted, but now I only feel ‘wobbly or dizzy’ when I do certain movements. I also still have a ‘pins and needles.’ tingling in my left side, mostly arm/hand/leg/foot. It has gotten better with time but is still sensitive.”
When asked about one frustration that she has, Jen was honest with her acknowledgement of there being multiple hindrances, “I don’t know if there is one particular frustration. It is usually a combination of things. For example, overcoming the fear of another stroke, trying to combine the pre-stroke person with the post-stroke person, dropping things from my left hand, when my daughter wants to sing ‘Happy Birthday’ or a nursery rhyme and I can’t remember the words.” But repeating the phrases or the words of the nursery rhymes over and over and over again will eventually build new connections in the brain.
How life has become different since the stroke
This is very difficult to answer, because you have to really think about your life and how it impacts others, and how do others perceive you. Jen is no different. “I appreciate things in life more…the big and the little things and try to acknowledge them each day. Life is too unpredictable and short to not be happy. I am also looking for a way for good to come from this experience.” And I suppose we all are always, whether you have a stroke or not. Jen wistfully says, “It took me a long time to even be able say ‘I had a stroke.’”
A new understanding of other conditions
A stroke opens you up to understanding that life is not perfect for anyone, and it is how you view yours and the world around you. “I would like to think that circumstances have made me more understanding and compassionate others.” Jen says. “Everyone has their own story and is just trying to find their own normal. We should support each other through those triumphs and challenges…big and small…they make us stronger. “
Jen is cooking “healthy, less processed, fresh meals for Chris, Savannah, and myself.” She goes to her neurologist once a month and gets her blood pressure checked. Staying on top of it is the way to go.
I thought Jen was really thoughtful when she said the following in all it honesty, “I don’t know if I am actually a different person post-stroke but I see it as though I have a chance to re-invent my path. I can only hope that in some way my story empowers others. I try not to let my stroke define me but of course it has changed me.“ The stroke is a part of who she is, but it is not everything. Wisdom!
5 important lessons to learn from Jen’s story:
- Eat healthy foods, as Jen and her family was, and is, doing.
- Listen to your body when something doesn’t seem right, as Jen did with her vision and headache after spin class, and called a physician.
- Good days vs. bad days – just as Jen did, use your support to help; your true friends want to help you become even better, even if you have bad days. Life is a process, and you wouldn’t be normal if you did not have “wake up on the wrong side of the bed” days coupled with days where you feel your progress!
- Never, ever give up on being the best you can be! You may not be able to do things they way that others expect you to, but you can do just about anything you set your mind to. And Jen believes that she can do this by training herself and never giving up.
- Everyone’s “new normal” is constantly changing, whether you have had a stroke or not, and by acknowledging that now means that you accept and celebrate people for where they are today. Jen understands this, as exhibited by her attitude.
And remember – levity is so important – allow yourself time to laugh everyday. It helps tremendously when you don’t feel like getting up and tackling the things you have to.
Jen is an inspiration for some many reasons. This story tells of her journey, and it opens us up to who she is. I believe it is the way that we can all learn: this is living a life to the fullest!