And here is my story. ..
I went to the hospital to have heart surgery, to get fixed. I came back broken instead.
My stroke story begins with me saying with tear filled eyes and a lump in my throat, "Mommy has to go to the doctor for a few days, they are going to fix my heart so I can run, climb trees, play hide-n-go seek and other fun stuff with you girls," to my then almost 6 year old, 4 year old and almost 2 year old daughters.
On September 18, 1992 I suffered a "brain hemorrhage" a complication during heart surgery, at the age of 23.
The initial affects of the hemorrhage were the drooping of my eye and my mouth and my head drooped to my left side. As hours passed my left arm and hand were noticeably tight and pulled up, my wrist was turning in and my fingers were tightly clenched. My left ankle pulled in slightly and my toes were curled. I knew how to walk, however my leg and foot didn't seem to listen to what my brain was telling them. My left leg was very "spastic" in movement and my left arm was spastic as well. I didn't feel my hand or my fingers; I could see my hand being touched, however there was very little feeling. I learned later that I have "displaced sensation" on my left side. One of the other affects of the brain hemorrhage that was immediately noticeable was the very abrupt change in my personality. All of the sudden anything that came into my mind, came out. I had lost my filter; they referred to it as having dis-inhibition. I had never been a person to use profanity, I had always been a shy quiet person. Until that day! I suddenly became a person who had something to say about everything whether it was appropriate or not. My vocabulary had grown to be very colorful and opinionated.
I was sent home 5 days after my heart surgery. I was told the affects of the brain hemorrhage would clear up in a week or so. Only a week previous I left my three little girls saying mommy is going to the doctor to be fixed, needless to say it didn't turn out quite that way! Yes, my heart was repaired, however I was a different person and had very limited use of one half of my body and my personality was totally different. How do you explain this to an almost 6 year old, a 4 year old and an almost 2 year old?
After my return home other issues were becoming more noticeable like, the change in my vision, one of my eyes was a bit slower than the other. It took a little bit longer to focus and to track. My hearing, I could only "hear" one thing at a time and when there was added noise everything became "jumbled" and confused. I suddenly had a very difficult time with my short term memory recall, I got lost going from room to room, and I was very directionally challenged. I had great issues in reasoning things out in my head like putting puzzles together, turning clothes inside out and folding clothes was an emotionally frustrating experience and such a challenge; just folding socks was very confusing and stressful. I could not recognize what knob turned what burner on/off on the stove. Math was never my strong subject, and now, I could not even do the simplest of math. I had trouble remembering things that I had previously learned. I had a great deal of trouble completing any task and I could not multi task at all; it was all so very overwhelming. I was extremely irritable and I felt anxious all the time. It felt like there was always "noise" in my head. I could not focus well, I could not keep my thoughts straight and I could not remember the most common of things; common things, such as, "did I feed the girls breakfast?" I felt stupid. I felt incompetent. I felt like through no "fault" of my own I had lost everything. I was having a difficult time with bumping into things and tripping over things. I later learned more new words to describe what was going on with me, "Apraxia"and "hemi spatial neglect within my vision ", "Ataxia"was another new word. As time went on I noticed that I received information a different way, it seemed that I saw, heard and understood everything in a very literal way; I had very black and white thinking. I noticed that I was suddenly apathetic toward most things, however things I consciously cared about, I had very deep emotions directed toward those things to the point of being hyper-emotional. If something made me feel angry I would feel rage, if something made me sad I would feel devastated. I felt like I was on an emotional rollercoaster and I could not get off. The support system I had when I went in for surgery was confused and just wanted me back to normal. There was no reason for me to be having these problems, the physical ones and most certainly not the ones they could not see.
After my return "home" I had to realize the small business I had, doing electrolysis, I could not do this any longer with my new physical state. I had to close my business. My husband at the time made the choice to take a job away from home. He couldn't handle the "new me". I was incompetent as a mother. I felt I was stupid, I was confused, I was insecure in my decision-making, and I was insecure socially. I was insecure about my looks now that I had an arm that jerked uncontrollably and curled in to my side and I walked with a very noticeable limp. I felt very unattractive both inside and out. I felt like I had become everyone's problem, including my three small children's. I was different. I was broken. I went from a 23 year old mother of three young children, a wife, a small business owner, a young woman who had a plan for her life, to a disabled woman with an uncontrollable vocabulary mixed with an opinion everyone heard whether they asked or not, within a few short hours. The new me was not accepted. The new "me" was difficult for everyone to handle, including myself.
After going back to the doctors, I was told I was healing from the heart surgery remarkably well, the other stuff, not so much. They decided on medications that would be helpful to control the spasticity in my arm and relax the muscles in my leg that were causing my ankle to turn in and my toes to curl. They still maintained that the affects from the bleed would get better. I was put on Klonopin and Baclofen to help with the tightness and spasticity in my left side. I had begun to experience a great deal of discomfort and I was in much physical pain due to the wear and tear on my body, the left side being so tight and the right side compensating for my left side. All of that combined with the fact that I was healing from having my chest opened up and my heart repaired. After being on those medications for a while I began having seizures. The doctors decided to add Tegretol and Depakote to my medications. The cause of the seizures was never agreed upon. My little girls had to accept a whole new Mom. A broken one.
Finally, nine months after my brain hemorrhage, with a consistent decline and no improvement, I was admitted to an inpatient rehabilitation center for spinal cord injuries and strokes. I underwent a CT scan, an MRI and a SPEC scan. I was given the information that I had suffered from a "right side deep frontal lobe with spatters into the left side brain hemorrhage." I had suffered a stroke! It was the first time the word stroke had been used. I had to start over. I had to get a new plan. At least now there was a reason for my physical state and my emotional state. Being a mother is all I ever wanted in my life. My children were everything to me. I had to recover from this stroke so that I could someday be normal again. I had to recover from this so I could raise my daughters and not be broken any more. With all of the emotions and the physical and neurological challenges, in the aftermath, the one thing waiting for me was my 3 little girls.
While being at the rehab center I had daily physical therapy, daily speech therapy and daily occupational therapy; a physiatrist and a physiologist also saw me. Someone finally understood what I was going through, physically at least. My daughters were seen by the psychologist as well, and my husband at the time was not interested in the counseling offered. It was explained to my parents, siblings and the people involved in my life before the stroke, that it was true, I was not the same as I was before. I was weaned off the medications I had been previously put on. I was fit for a brace on my leg to keep my foot from turning in and a brace for my hand at night to straighten my hand/wrist. I had a series of casts on my hand in hopes that my hand and fingers would relax. They tried numerous alcohol injections in my leg to loosen the muscles. They tried many things, however nothing seemed to work for very long. I spent 6 weeks in the rehab center. They gave me a big room with a kitchenette, my little girls were able to come and stay with me so I could re learn how to take care of them now with one hand instead of two, and with a very jumbled mind. I learned how to create and stick to task lists, slow down my thinking, slow down my breathing, slow down everything, keep things orderly and calm, keep noise to a minimum and how to focus on "hearing "the important things. I learned how to do tasks the easiest way possible for me. I was told I could no longer drive. After testing I ended up driving with restrictions and special equipment to make driving safer. I was sent to a neurologist who tried Botox injections on my arm and hand muscles, it worked for a few weeks at a time. They made it so I could get some physical therapy on my arm and hand. I was sent to an orthopedic surgeon and surgery was scheduled almost a year from the date that my "brain hemorrhage" occurred. They reconstructed my lower leg, transferred all the tendons on the right side to left side, lengthened my Achilles tendon and replaced the bone in my ankle. I spent more months doing outpatient rehab on my leg. The next September, again almost a year to the date of my last surgery, I underwent another surgery on my foot. They severed the tendons to my toes. I again spent more months in outpatient rehab. I finally could walk without my brace! I was sent to vocational rehab and I showed a particular interest in the counseling field. I started taking classes and was given the opportunity to do an internship. At home I began doing weight-bearing exercises to strengthen my upper body. I played the game perfection over and over and over and other games with my girls to try to get some small motor skills back.
In time I was able to run, climb trees and play hide-n-go seek and have other fun with my daughters. I was not the same as before, however I wasn't as broken. I was forced to see things a new way, I was forced to realize the only thing I have control over was my choices, my thoughts. I had to be flexible in my thoughts and choices. I had to learn to trust the flow of life, accept who I am now. I had to accept that I was never going to be the same as before. I learned to educate myself on my own body and understand what I had been through. I had to stop living in the past and wonder why this had happened. I had to learn how to stop feeling angry, guilty, and feeling inadequate. I had to stop having "Mommy guilt" and realize this would make my daughters stronger and more compassionate and more empathetic people. I had to stop living in fear. The things I had no control over, which was most of everything, I had to let go. I learned how to accept my limitations. I realized how to accept myself. I had to learn to love myself. Looking back I think more education for my family members and close friends would have been very beneficial for them, and in turn myself. Attempting to rebuild and recuperate from something so life changing while having to suffice everyone around you is too much to handle. Still to this day the majority of my family have very little understanding of the effects the stroke had on me. They seem to have accepted the physical effects. The turned in wrist and spastic rigid hand and arm, no
one really notices my limp when I'm tired anymore. The things they have little understanding for are the challenges I have coming up with the right words sometimes, the fact that I get lost very easily especially in unfamiliar settings, for example if I drive I may find the destination however I have no idea how to return, or in a restaurant if I should need to find a restroom I find it however it's not that easy getting back to my table, parking lots are a nightmare for me, anyway finding the car is. They do not understand that I can only hear one thing at a time nor that I get overstimulated easily especially when I'm tired.
I still wear a brace on my hand at times and walk with a limp when I'm fatigued. I still struggle with being directionally challenged and I still have scattered and confused thoughts when I'm tired. I still have trouble coming up with the right words when I'm tired or stressed. I still have trouble hearing more than one thing at a time and when I'm tired my eyes have a harder time focusing. I still have pain associated with the wear and tear on my body due to the right side compensating for the left and the tightness and spasticity in my left arm and my left hand. I no longer drive with any restrictions. I still have many daily challenges. I look "normal" to the people around me so they feel better about "me", however the issues that are not visible are still there. I have learned how to cope with most of the issues inside, the getting lost, the confusion the overwhelming urge to tell everyone what I think. I have learned how to slow down and get through these issues. The doctors told me that there was a surgery wherein they could clip a part of my brain and that may release the tightness in my left arm and hand. I have yet to agree to this.
With all of that being said, I have three amazing, compassionate, independent, loving and beautiful daughters who are all now Mothers. I have nine amazing grandchildren with whom I can play with. I have a career as a substance abuse/violence prevention specialist/ life coach. And I now have an amazing supportive husband who loves me, for me, with my disabilities. I think and hope, in time, the people who have waited for the real me to come back, after recognizing that "she is not the same person" have learned to accept the changes that life throws at each one of us. I truly hope that through this experience those who were close to me, learned tolerance and empathy. I feel very thankful to have the opportunity to share my stroke story; I am just one of a number of younger people who have experienced a stroke. My stroke took place 21 years ago.
Stroke recovery is a lifelong process. It's up to the person to determine how far their recovery will go and how their life will be. It involves a great deal of patience, perseverance and a will to survive. My hope is to give back to the many people that have helped me and my family through our journey and give hope to someone who may be having similar challenges in their own personal journey.
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