What its like to experience a life changing stroke
| The Journey Home
There are many journeys a human can embark in a life time but none so difficult as the one from an unexpected illness that leaves you disabled. This is my story and my personal journey from a place of despair, hope and self determination to regain the life I once knew.
I’m an office worker, a man in his mid sixties who works for a large auto manufacturer. Like many people, my job is filled with stress, endless irritating phone calls and a mountain of emails that never seems to decrease as my day goes by. It was late on a Friday afternoon when the mouse on my PC felt increasingly difficult to move. It was like I was pushing a lead ball. There was no pain or discomfort, just the sensation in my hand that something just wasn’t right. I continued to work on despite my little problem and didn’t give it much thought. Surely it was just fatigue from typing and trying to finish up a long week of cases I thought at the time.
As my work day ended, I signed off on the PC eager to start my weekend. My plans included participating in a company Christmas breakfast to be held at Disneyland. I stood up from my chair and immediately noticed the right side of body did not feel quite right. I felt off balanced, a bit wobbly and just not centered. As I was attempting to leave the office it was becoming increasingly apparent there was something medically wrong with me. Undaunted by my condition, I awkwardly exited the building to my car and got in. I knew I was not myself but stubbornly as I often can be, decided to drive either home or to the hospital ER since both were in the same direction and same geographic location to one another. As I drove my car onto the freeway I was committed to joining the rest of my fellow commuters for the weekend exodus. On this particular Friday traffic was very heavy. As I inched along, I was trying to decide on whether my condition was indeed bad enough to exit to the ER or just head home, collect myself,then make the decision on whether I needed to be hospitalized. This would be the second visit to the hospital this year and my last visit was a two day stay for a pancreatitis condition and blood clot. The costs of that visit still lingered heavily on my bank account. I decided there was not much time difference going to the ER or home and found more comfort in my decision to go home and making this decision. As I drove into my garage it was already night. I opened the car door and tried to exit. My left leg moved freely to the outside but I could not get my right leg to move on its own. At that moment the decision was certain. I needed to go to the ER. I used my hand to move my right leg out of the vehicle. Holding myself up and leaning on the car I managed to leave the garage and drag myself to the front door. I had some difficulty unlocking the door and entered the house immediately going to the bathroom. Take some aspirins I thought to myself. I don’t know where I heard this but I knew if you were having a heart attack they recommend doing it. I made it to my bedroom and crashed onto the bed with a loud thud. The right side of my body was not working. I managed to be able to grasp my cell phone with my left hand and quick dial my best friend at his home. The phone rang several times with no answer. I was nervous that my one chance of getting to the hospital was about to end up as a 911 call but then an all to familiar voice answered “ Alright, who died ? “ This was our greeting that we comically have made over the years of friendship. “Me, if you don’t get over here to take me to the ER. I’m having a stroke! “I yelled over the phone. There was a moment of silence, followed by “Are you sure?” questioning my statement. “Marlon, I can’t move my right side, I’m sure! I need your help! “Ok, ok, I’m coming over. Do you have a blood pressure tester? ” I reached into my night stand and grabbed my blood pressure tester. Trying with one hand I managed to get it around my wrist and push the “ON” button with my nose. After several seconds the results were present, 222 over 110 was the reading. I knew this was a high reading and told Marlon the results. “Your pressure is really high, relax and take it again after a couple of minutes and see if it comes down?” he said. “I’ll be there as fast as I can” and he hung up the phone. I was somewhat relieved that he was coming to help me get to the hospital. I laid there on the bed trying to think about just how bad my stroke was and if the paralysis was going to be a permanent part of my life in the future? This thought was a very scary thing and seemingly, was all that I could concentrate on at that moment. As tough as I thought myself to be, I laid there helpless as a toddler trying to move my right side limbs managing but only the most basic of movements. In my head the request to lift my arm was there but it failed to completely connect to my arm. The fears that my situation was dire had hit me like a knockout punch. I laid there motionless, loathing and uncertain of anything.
Time changes differently when certain moments in your life occur. Some moments you wish could happily last forever, and others, a painful reminder of a harsh nightmare that you cannot awaken from. So it was waiting for Marlon to arrive and knowing with some certainty my outlook was bleak at best as time dragged on. There was noise from the front door opening followed by a familiar voice, “Dave, where you at”? With some comforting relief I mustered a garbled “Back here Marlon”. As Marlon entered my bedroom the look of desperate concern was written on his face. “Hey brother, I’m really glad to see you” I murmured. “I think you’re going to have to carry me to your car”. I could not even roll over on my side to assist him with the task of getting out of the bed. He managed to get a hold on my somewhat limp body and got me to my feet. I nearly fell as he tried to figure out the best way to maneuver my half paralyzed body out of the bedroom. With Marlon supporting my weakened right side, I hopped on my good leg down the hall and out the front door. We navigated the stairs and down the walkway to his car. He opened the passenger door and placed me on the seat. There was a sense of urgency that didn’t need to be spoken between us as he could sense my situation as being very serious. Not much was said between us in the 1.5 mile trip to Saint Joseph’s ER. He asked me if I had called CeCe my fiancé. I told him that I wasn’t able to get a hold of her. We entered the ER driveway and two attendants came to the vehicle. Marlon got out and told them that a wheelchair is needed and that I’m having a stroke. One attendant hurried off to retrieve a wheelchair as the other attendant opened the passenger door to assist me out. I was placed in the wheelchair and rolled through the ER entry doors. A med tech came up to us and we told them I was having a stroke. I was immediately wheeled into the ER as several medical personnel surrounded me in what I could only refer to as triage formation. It was like a war movie but this time I was the main character that was being worked on by the doctors and nurses. Blood pressure, heart monitor and several other testing equipment was hooked up to me at a rapid pace. This was an all too familiar routine to the staff members who have had ample practice at their profession and time was ticking. Little did I know that there was a 3.5 hour window of treatment in which the long term effects of strokes could be minimized by having a shot to slow down the blood clotting in my brain and limiting the amount of damage suffered from the stroke. As the minutes flashed by my body started to react to the drugs I was given and I was feeling euphoric and disconnected between body and mind. My body was starting to surrender to the effects of the stroke. My right leg started to convulse wildly as did my right arm. I had no control over the muscles on my right side until the shaking stopped. I managed to raise my right arm up and leg as well and thought that the efforts of the medical team had halted my stroke and I slowly relaxed my anxiety about the full damaging effects of my stroke.
It’s my nature to joke about things, even the bad stuff, to let people know that humor can make the worst of circumstances a little more bearable. At this time my right toe was bending the opposite direction from my other toes. “Look at my right big toe”. Marlon responded in a quiet voice,” You have a boner toe.” I immediately started to laugh and could not stop. It was a uncontrollable laughter and infectious to the attending nurse and Marlon. He had to get up from his chair and walk out the room. I could hear a faint giggle from him and I blurted out the words “Boner Toe”. His laughter was uncontrolled as was mine and for a couple of moments in time I had forgotten that I was a stroke victim. Little did I know that it was a false feeling that the worst was not over and that a full recovery was not in my future. An hour or two had passed and my fiancé CeCe showed up at the ER. Her concerns over my condition was one of trying to understand the nature of what a stroke actually is and offering assistance to making me comfortable in bed. Our joking around about my condition may have confused her to the seriousness of my hospital visit. By morning it was apparently very clear to me that the full damaging effects of the stroke had left my right side of my body paralyzed. My speech was impaired but still understandable. Words were difficult to formulate and hard to pronounce. It took some effort to make a conversation with the attending nurse who was checking my vitals. The seriousness of my condition was no longer a mystery to me as my understanding and general knowledge of strokes had now become very clear as I was now living in my nightmare and felt extremely helpless and vulnerable in my bed. The remainder of the day was an endless parade of doctors, nurses, and other hospital staff all trying to add their expertise to my condition. They showed compassion to my state of health but they could not offer the one thing I needed most and that was someone saying I’ll be ok and would make a full recovery. Those words never seemed to be spoken by anyone who entered my room. Things seemed to get worse as the next couple of days drifted by. Questions concerning my living arrangements with CeCe surfaced with regards to the subject of my long term care needing to be discussed. It was assumed that CeCe was going to take care of me 24/7 as if we were living together. This was a role not discussed between us and left us both questioning our relationship under the current circumstances of transpired recent events. On the evening of my fourth day staying at the hospital it was determined by the hospital staff that my condition was now stabilized and I would be transported to a local rehabilitation facility by ambulance during the height of rush hour. I was being carted out of the hospital past a multitude of personnel towards a rear exit when one of the specialists that I had just visited several weeks earlier for my previous hospital visit came walking towards me and recognized my face. “What the hell” he blurted to me as I was being wheeled out. As I passed him trying to maintain sight of his faced I yelled out one word “STROKE”, and exited the hospital to a waiting ambulance.
Rehabilitation At Encompass
The trip to rehab was uneventful and I was greeted by the attending staff with a wheelchair at the front door. I was taken up to the second floor, then to my shared room. Being wheeled into the room I was greeted by my roommate Brett with a not so warm “hello” and settled into my bed with curtain drawn between us. I may add that Brett looked to be a late twenties to early 30’s rock band musician covered in tattoos from the neck to both of his entire arms and probably his entire body. His shallow “Hello” seemed to be his response and disappointment that he was no longer having a private room to himself. I settled in and shortly fell into a drugged sleep which was a relief from the drama of being in a hospital environment and being wakened every couple of hours by a hospital staffer. Unfortunately to my disappointment this routine continued at the rehab center as I was awakened every few hours by staff checking my vitals and taking blood samples. To make things more interesting Brett needed to go to the bathroom located in front of my section of the room every couple of hours so sleep was not something I was getting much of. The next morning breakfast was served way too early and I was barely functioning on any level from a combination of heavy drugs and a major lack of sleep. Staffers were making their rounds and one by one greeted me and told me their role in my rehabilitation while staying at Encompass Rehab Center. By mid morning I was wheeled down the hallway to the exercise room where there was plenty of activity going on. There were patients of all ages and disabilities present but mostly older folks who worked with staff therapists on a one on one basis. This particular facility had a great reputation for giving a lot of rehab time to the patients daily. I settled into a routine of trying to get myself normalized health wise to functioning on some level to be actually making any attempts at exercising those parts of my body that no longer worked. It was a great deal harder than you would imagine.
The following days settled into routines where the staff would wake you for breakfast, then take you down to exercise with one of several therapists, then lunch, more therapy, dinner, visits from friends and co-workers and eventually sleep followed by visits from staff vampires taking blood at unusual times at night. I learned several life lessons that should be mentioned and met some really dedicated people who I call my heroes. These people are not rich nor famous and many of them don’t get credit for how big a role in the comfort of the patients that they care for truth be told, but to me, were more important than the doctors who visited me periodically in my stay at rehab. These people that I speak of are the attending nurses (both male and female) who made the little things possible for me to keep my sanity. They helped me out of bed and get to the bathroom. They did the unspeakable acts of human kindness that when you are recovering from a dramatic illness will forever be remembered. I repeated stating that there is no humility when staying in rehab or a hospital and for those reasons my gratitude to these workers will never be enough. Part of my stay included speech therapy. My lunches were scheduled to be part of my therapy to see how well I managed swallowing food and had conversations with others attending lunch. One person I had many lunches with was the deacon of a church who was a retired Marine of thirty years of service to this country. He was an elderly black gentleman with pearls of wisdom. He told me that he fathered eight children of which six were still alive today. He asked me if he could say grace before eating when we had lunch together of which I never objected to this. In his verbal prayers he always said “Thank you lord for giving me what I need this day”. I asked him about this prayer and why didn’t he pray for being healed? “At my age, I’m grateful to have another day to share with my family and friends, isn’t that enough to be grateful for?“ he replied. I suppose he was right.
One particular day I was working with Patty who was one of my favorite therapists. She was kind and caring and knew the value of a good cup of coffee to her patients. While she was getting me a cup of coffee from their break room I was able to move my right index finger on my paralyzed hand. It was the first time I could move a right finger since my stroke. It really got to me emotionally and I started to well up. Tears were forming around my eyes and from out of nowhere I hear “Are you crying?” Patty returned with my coffee. “There is no crying in rehab. Just look around you Dave. I’m going to get my laptop and when I get back there better not be any tears”. I looked around and you know she was right. Looking around I could see a lot of people in worse shape than me but none were crying. When she returned I had to explain to her that they were tears of joy not sadness. It didn’t make any difference. There’s no crying in rehab.
After spending my Christmas in rehab I was finally released on December 28th having spent 18 days there. I returned home just grateful as hell to see the inside of my house once again. My journey home was complete but only in the physical sense. Mentally, I’m far from where I want to be in my recovery from the stroke. I face many battles daily like trying to open a jar of spaghetti sauce (took literally ½ hour open the jar). There are so many obstacles that I face every day that a child can master in a few minutes that I must overcome. I’m now on a leave of absence from work and trying to get back to being able to drive my car once again as so I’m not so dependent on people shuttling me around all the time. It will take some time getting that sorted out as well as having my car modified for a left gas pedal operation. I have since purchased a mobility scooter to get around in stores and doctor appointments along with occupational therapy sessions. I’m trying to get an exo-skeleton prostatic that uses a computer to aid in my recovery and give me some functioning use of my right arm/hand but my insurance company won’t pay for this device so I have a lot of time on my hands these days. I’m not giving up trying to get some functionality of my right limbs once again but it’s an uphill battle for sure. To those of you having read my story please have some sense of gratitude to being able to enjoy the simple things in life that we all have taken for granted. I offer you my love and thank you all for the kindness you have shown me in my journey home.