I am … a Survivor.
Some may know my story, some may not, but this past year has been a journey and a learning experience to say the least. May is National Stroke Awareness Month and I was encouraged to journal my story to help bring awareness that strokes don’t just affect the elderly, and they do not always have the same presentation, but they do forever impact those involved. Over the last year I have found a strength beyond what I ever thought possible. I have learned that my children are more than just children who love me, they motivate me every day. This is my come back strong story from a massive stroke where every little thing taken for granted on a daily basis became my daily reality of struggle to do some of life’s simple list things. Facing what looked like huge mountains some days is where I learned patience, courage, strength, devotion to get back to where I was; to be a mom, a wife and a nurse practitioner. I have learned not to take anything for granted. I have learned the power of hope, faith, attitude, determination, prayer and the power of the mind. All necessary ingredients for overcoming the damage of a stroke and its impact. This is my journey of physical, emotional, and spiritual comeback!
It was the beginning of the Summer of 2016. It had been a busy time of year for us, more than usual. In May 2016 we finished closing on our new home, became first time landlords and signed our first contract with tenants, packed, moved, celebrated our sons 4th birthday party, cheered him on at his last soccer game of the season, and attended my Grandmother’s funeral. It was beyond a crazy busy time of life never mind the daily grind of work and loving and caring for an 18 month old and a new 4 year old! But that was life at the moment and it was an exciting time. June 3rd 2016, like the song says “alarm clock screaming bare feet hit the floor, everybody to the races everybody out the door”. It was a Friday, like any other day of the week. Little did I know how drastically life would change and how life’s priorities would be put into perspective in the next few hours.
I finished up my afternoon working as a rounding nurse practitioner. I went to pick up my kids, went to the grocery store and then went home to unloaded the kids and the groceries. Then I went upstairs to change out of my work clothes and get into play clothes to play with the kids. It was a typical day in the life of a full-time working mom. I had felt fine all day long. No headaches, no blurry vision, no numbness, no tingling. I felt good, besides a little fatigued and tired but what working mom isn’t? For me it was typical for the end of a week. While my kids were playing upstairs I went to use the restroom.
It started with a loud pop and ringing in my ears. Next my vision got spotty and then progressive numbness and tingling in my fingers and toes began. I couldn’t shake it. I took a few deep breaths thinking it was nothing, but as the symptoms continued to progress I knew I was in trouble. As a curtain was pulled over my eyes until I could no longer see, I yelled for my four-year-old son. Hearing myself speak, I realized my speech did not sound right. So with the little speech I had left I remember telling him “mommy is in trouble get help” ! As I tried to stand up from the toilet I fell to the floor with no control over my body movements. My arms were flopping and lifeless when I tried to lift them. I had no ability to see. My speech was garbled, slurred, and I am sure at this point I was not understandable, just a bunch of mumble jumble. I had no power, I had no warning. I knew what was happening but “this is not what a stroke patient looks like” I kept thinking. I am only 32 and healthy. This can’t be happening to me. “Dear God not a stroke please” I kept saying in my head. I knew the devastating aftermath a stroke leaves behind and I thought “how would I be a mom and a wife if left like this”? My four year old then dragged me from my bathroom to the stairs to try and help him unlatch the baby gate to get to the phone to call for help which was downstairs. He eventually kicked the gate open, went downstairs and called 911 for help! He will forever be my Hero!
As he called 911 and told the operator his mommy needed help I could hear my 18 month old daughter in the loft screaming and crying. I tried to mumble to her to calm her but with no success. My Son returned upstairs with the phone, placed it next to my ear, and went to console his sister. I could hear the operator on the phone saying they couldn’t find our address. I tried to speak and give her the address but no one could understand me. Because we had recently moved there was confusion on the address, adding to my mounting frustration and helplessness. Once help arrived, I was so relieved. It had felt like forever that I had been laying on the floor. This was so frustrating for me as I had no control over myself or my ability to do anything. As a nurse I knew I was having a stroke and there was nothing I could do but wait and trust that God would step in.
As they loaded me on a stretcher and into an ambulance, my next concern was “what about my kids”. Since I could not see or speak I could not voice my requests or even see where my kids were or what they were witnessing. I heard someone say the police officer would stay with them which at the time I guess was comforting to know but then where would my husband go? He would have to decide to go from work to meet the ambulance at the hospital or go home and be with our children. Just as these and many other thoughts raced through my mind, an unfamiliar but calm voice came near and it was one of our new neighbors. He lived across the street and came to help! He happened to go to our church and new us! I heard him say he and his wife would take the kids and look out for them as long as needed. I will never forget his voice or his actions. It was the first moment of peace that came over me.
Once I was loaded and ready to roll, unfortunately my frustration would continue to grow. Hindsight is always 20/20, but because of where my stroke was located and maybe my age (32) I did not present with the typical features of one sided weakness or facial droop. My deficits were equal bilaterally and the movement of the ambulance on the road made me so dizzy I was vomiting, with slurred and at times incomprehensible speech…not that unlike a drunk patient would present just without the smell. I recall a paramedic handing me what I believe to be a vomit bag to vomit in but i could not hold it or see it; my first encounter with swallowing my pride kicked in as I was naked and now covered in my own vomit. My inability to see, or move, or communicate was so defeating especially as I knew what was happening, but I could hear no urgency in the first responders. They determined I did not need to go to the hospital with lights and sirens and I did not arrive as a code gray (stroke alert). Regrettably, I knew this would potentially delay my treatment upon arrival and treatment for a stroke is extremely time sensitive. Again another moment I had to trust that God was in control and would take care of me. However, I could not fathom why this or how this could be happening to me. It was in the time I spent laying on the stretcher in an ambulance where I had to surrender what little control I thought I might have left and allow God to truly step in and take control. I had to let go and let God and those taking care of me to do just that. And for those who know me, they know how difficult letting go of control is for me. But God did just that. Little did I know that He was already intervening on my behalf.
The first responders had reached my husband and explained they were taking me to the hospital. Luckily I had had prior conversations with my husband about which hospitals to go to and which ones to decline for certain types of care; the benefit of working in healthcare I suppose. My husband pleaded with them to take me to a larger center where they could handle anything and everything. After some persistence, on his part, the paramedics agreed to reroute and I ended up at a hospital equipped to treat and manage what we soon would learn had occurred. It was also the hospital that one of my best nurse practitioner (NP) friends happened to be working at the time of my arrival and she would become my next angel!
Once I arrived at the hospital I was taken to a room where they took my vitals, blood was drawn and the doctor arrived to assess me. I am unaware of how long I was in this room before I heard my NP friends voice come through the door but I was so relieved. She started trying to talk to me and quickly realized something was very wrong. I heard the doctor ask her “what about your friend is not right?” She immediately responded with “this isn’t her. She is very intelligent, very put together, very fast thinking.” Meanwhile, over the intercom, I heard two code gray (stroke) alerts called. This meant those patients would get priority in a CT scanner over me as I was not initially assessed as a stroke alert. But I knew that is where I need to go and fast. My friend, thank heaven, insisted I be the next patient in the CT scanner.
After the results from the scan came in it became very clear that I was having a large stroke. I showered clots into five places in my head with the largest cutting off blood supply to my right and left cerebellar regions. I could hear the pharmacist in the room preparing to hang TPA (a very strong clot busting medication). That is when the reality of what I feared was happening was confirmed. I kept thinking “hang the TPA fast” as I knew it had been awhile since my symptoms began. There is only a 3 hour window in which TPA can be given to try and break up the blood clot cutting off blood supply to portions of my brain. Just then I heard someone holler into the room “do not give the TPA”. Those words cut through me as this was my best chance of stopping further damage and limiting disabilities and potentially restoring some of the functions, such as my vision, which I had lost. But, I had already started to have brain swelling near my brainstem. I was no longer a candidate for TPA. The damage had begun and how much more damage there would be remained to be seen over the next 24 hours. Knowing what I knew I remember hearing my husbands voice in the room, leaning in his direction and telling him in mumble jumble “Please do not leave me a vegetable, do not put me in a nursing home”. Knowing that swelling near my brainstem could leave me totally bedridden, potentially unable to see, unable to communicate, unable to do anything for myself. The fear of total disability flooded my mind and I think at that moment it scared me more than death itself. The longest and scariest 24 hours of my life began. All anyone could do for me was wait to see if symptoms would get better, would get worse, or if I would need surgical intervention.
I was admitted to the Neuro ICU where I would spend the next few days. I remember feeling so tired I couldn’t keep my eyes open and the headache was crushing. I could hear people, nurses, doctors, techs, my family, quietly coming and going. Over the next several days I would have the million dollar work up. I was seen by neurology, neurosurgery, critical care doctors, hematology, cardiology, and a cardiac surgeon. I would have multiple CAT scans, MRI’s, ultrasounds of my legs, neck, heart, and blood work galore as everyone tried to determine why I had such a massive stroke at such a young age.
Over the first 24 hours I recall my anxiety, my fear of breathing or moving as to not dislodge another clot somewhere, wanting to keep my head elevated to decrease risks of brain swelling. I quickly wished I didn’t know what I knew. “Knowledge is power” my Aunt always tells me, but at this moment knowledge was terrifying. The agonizing “wait and see” approach was the only option we had over the next 24-72 hours. Would I end up needing extremely risky surgery to remove the clot, would the swelling near my brainstem swell enough to take my life, would I ever regain my eyesight and see my kids and family again? So many questions and fears and no control or intervention to determine or predict my outcome. Laying in the ICU, on the other side of the bed (as a patient and for the first time not a provider of care), gave me a new perspective for sure. It was terrifying yet at some level I felt strangely at peace. When nothing made sense, and felt so unfair. When fear and uncertainty was overcoming God’s presence became enough and I felt a peace as I surrendered all and I could rest. I new as the night was holding on to me God was holding on too! However, for my family and my children it was a traumatically difficult time of preparing for the worst, praying and hoping for the best. It was a heavy emotional burden for my family to carry and I am so blessed so many stepped up and stepped in to help them carry it while I could not.
At the 24 hours mark I began to have some visual improvement and my 24 hour follow-up CT scan showed improvement in the large clot with localized return in some blood flow. With that news I felt like I could breath again. By 72 hours I had regained my vision! It was a huge weight that lifted off my shoulders. Now the real recovery journey began as assessed I could no longer do so much without help. But, I could see my family, I could see my kids, and a little did I know how big of an impact they would have on my motivational drive through rehab!!
As the life threatening period of my stroke faded the focus turned to what capabilities I still had and what deficits remained. As I sat quietly in my room alone reality began to settle in. The reality of my inabilities. I had to face the hard facts that I now needed help to eat, dress, shower, toilet, stand, walk, talk. I felt like I had re-entered the stage of toddlerhood which was so freshly in my mind with a four-year-old and an almost two year old at home. It was humbling. Learning to comb my hair, brush my teeth, put one leg in at a time, pulling a shirt over my head, hold a spoon, color a picture. I could not return home with my deficits as the care I would need was too great so inpatient rehab was my best chance of having intensive therapy. I knew it was for the best but it was devastating to me and it finally hit me in the face on the evening I was transferred to inpatient rehab. This was the first night I cried myself to sleep. The hardest part of inpatient rehab was being away for my family especially my children and I know it was difficult for them too. The first time my almost 2 year old saw me I was in a wheelchair. She was scared of all the hospital surroundings, the heart monitor, IV’s. It took her a long time to warm up to me to give me a hug and let me hold her on my lap. I realize now the impact this event has had not just on me but on my kids and family as well. I felt like I was on emotional rollercoaster. I was at the decision point of allowing depression to take over, as I felt it creeping in, or to reach deep inside and find all the strength and courage God would give me to overcome. Well, I am stubborn by nature and maybe God knew I would need that quality trait some day. So I taped into a source of strength, stubborn determination, and unwillingness to give up!
As daily physical therapy, occupational therapy, speech therapy began hours a day for weeks which turned into months I quickly learned humility and appreciation. I would spend hours a day exercising my mouth, tongue, legs, arms, core. I was at a functional level of a toddler like my children. Terrifying thought at first, but eventually relearning how to do basic activities of daily living right alongside my kids and biggest cheerleaders would become one of my greatest moments! Baby steps of progress gave me hope. I learned to stand, walk, talk again. This meant a return to some level of independence and helped rebuild my self-confidence. Then came the challenge of walking on different surfaces like grass, gravel, carpet, inclines where each was a new challenge. It was difficult to balance to stay steady on my feet. Through this long process I had to grow a sense of humor and learn to laugh more than I cried. I had to embrace sometimes what seemed like such silly and childish speech exercises. I learned how to brush my teeth, get dressed, transfer into the shower onto my shower chair at home, folding clothes was now an exercise and not a chore. I learned to write my ABC’s and my 123’s all over again while Jack practiced writing his. Coloring was homework.
Each achievement became a victory! Every task, every exercise was exhausting. It all took so much concentration and determination just to “do it”. Some exercises looked so easy and silly but were now so difficult. But in spite of the challenge I was determined to walk on my own again without a walker or cane. So I pushed myself and always asked my therapists for nightly homework I could do in my hospital bed. It was exhausting but I was going to make the most of this time and I would have no regrets!
As therapy progressed I began working with a life coach to help me set realistic goals, to learn self acceptance of my new limits and abilities and to learn to ask for help. As someone who is a perfectionist at everything and somewhat OCD, realizing I could not do some of life’s simplest things was a hard realization. I’m not one who easily asks for help but maybe God was trying to teach me something as now I needed help with so much. My therapists were great and so kind yet pushed me to my point of failure which is what I needed. From family and friends to all the licensed professionals it was a team effort from the get-go. My team was totally committed to my recovery. They made me work hard but they did so with amazing encouragement and for that I will always be grateful! I was determined I would walk out of the hospital and I did it!
Over the course of the last year I feel like I’ve been poked and prodded and thoroughly scanned from head to toe, yet we haven’t been able to determine why or where this stroke came from. I have overcome my trepidation about the bathroom where it all began and I no longer need any assistive devices to function on a daily basis. I have had several procedures to better monitor for a potential cause of my stroke but still to no avail. I have had surgery to overcome a side effect of treatment on blood thinners and I will likely have another surgery upcoming to close a hole in my heart that was discovered during all of this. I have had a great team of doctors/nurses/therapists and being on the patient side of things has definitely given me a new perspective and respect for patients. We continue to be diligent about further treatment, research, and prevention methods, and try to let go of the fear that it could happen again.
June 3, 2017 will mark one year since my stroke. I am now back to what looks like normal life to most people. Walking and climbing up and down stairs (still with caution), showering on my own, cooking dinner, driving (short distances), and writing and typing for short periods. Normal activities we all take for granted, or at least I did. My PT, OT, ST, vestibular therapy is now an all at home based program as recovery seems to have plateaued. I continue these exercises along with a regimen of rest and good diet, to the best of my ability as my deficits still try to creep back in. I may feel dizzy at times; I may fatigue easily as physical and cognitive activity still consumes much energy; I may not tolerate lots of visual stimulation or dark or noisy environments very well; I may have more frequent headaches; I may have difficulty multi-tasking; and I may likely forget if I don’t write it down. But in spite of it all, I am beyond blessed for the recovery I have – given the deficits I started with.
As I take back the active role of mom, wife and a slow return to work I realize I have a new journey of learning my limitations as I try to settle into my life as “normal”. I still have setbacks when I overdo as increased physical and cognitive fatigue quickly take over control, but with each setback there have been comebacks since the stroke both physically, mentally, and emotionally.
Through it all I’ve been told I have a better sense of humor and I am more laid back. I have truly grown as a person and have had more time than I wanted some days for a lot of self reflection. Prior to my stroke life was moving a million miles an hour and in 30 seconds it all came to a complete halt. After spending 6+ months in 4-6 hours a day therapy with no other obligations, commitments, or calendar to to keep up with I had the chance to regain some perspective on life and to prioritize what was truly important. I have today and tomorrow to keep making strides. I have truly experienced first hand the power of the mind. Thoughts and attitude I believe make all the difference in the recovery process. I was determined to be optimistic, to be an overcomer, and to be as positive as I could be. My kids, my family were my motivation, my driving force in my determination to conquer what felt like overwhelming odds. Still today I have challenging moments when I fail at simple tasks or I overdo and set myself back a few days but it happens less frequently and recovery takes less time. I just remind myself to laugh, find humor in something, take a breath, keep going, and most importantly to live in the moment. I cannot predict my future as hard as I’ll try to control it, but I have today and I am determined to make the most of it!
I am now 33, a mom, a wife, a nurse practitioner and a stroke survivor! After such a personal catastrophe I have once again found happiness and a positive perception of life. Through this journey and lots of self reflection I have learned what I REALLY want in life, what I truly value and that’s my health, my ability to function independently, my children, my family and my friendships! I am more than blessed to be getting my life back on track learning to live with my limitations and pushing myself to continue to get stronger every day.
A huge thank you to everyone, friends & family near and far, that helped support me and my family, who provided love, encouragement and prayer for me and my family. This has been on a journey for us all. So, thank you for being there when I could not, there are not any words that could ever express my gratitude.
James 1:4 let perseverance finish its work that you may be mature, complete, not lacking anything