One of my mom's biggest concerns as I grew out of infancy was how cerebral palsy would affect me cognitively. As a nurse, she had somewhat of a greater understanding of the possible influence of C.P. on my intellectual ability and my body in general. She was concerned about my physical capabilities, too, but I know the intellectual aspects gave her the greatest pause. She worried about how I’d comprehend the world, advocate for myself, satisfy my needs, and experience life to the fullest with the fewest possible challenges.
Of course she would love me no matter what; and knew I would enjoy a rewarding life come what may. She also knew life is tough enough in the best circumstances, and although we can't pick the hand we're dealt, she prayed I'd have as many tools as possible to cope with anything that came my way, and worked diligently to help me master those tools. Thankfully, I have been blessed with the ability to create my best life, to live independently, to support myself and get whatever assistance I need. That is never taken for granted. I’ve been blessed with a positive attitude and it was instilled in me that there are always people facing greater challenges than me. I see it every day when I work with my special needs student; I’ve seen it among my friends and family – none of us is exempt. However, I do believe that in trials, there is purpose; there is a reason for everything. That said, and as positive as I try to be, one aspect of living with C.P. has left me struggling to find purpose and and has sorely tested my positive outlook: my surgeries. Between the ages of 4 and 12, I endured 8 operations. The majority of them were orthopedic, related to my cerebral palsy. Surgeries of this sort are usually done to lengthen muscles, relieve spasticity and realign bones, among other procedures, depending on how C.P. affects a person. They are performed to increase mobility, prevent conditions from worsening and to maintain or improve abilities. The weeks, or more likely, months in plaster casts, the muscle spasms and the intense rehab after the casts came off were challenging enough. I had the added “bonus” of developing a nearly-paralyzing fear of the surgeries that got worse with each subsequent operation. My parents were not aware of my fear until after my second surgery, an eye operation. Apparently, someone on the surgical team, I’m not sure who, told my folks how “awful” and uncooperative I was, and I fought being put under anesthesia. Even then, the full extent of my fear had yet to be revealed. My mom got a true picture of how deep my fear went about a year later when I had my tonsils removed in an outpatient procedure. The surgery was delayed for hours, at least that’s what it felt like, while I sobbed, terrified have the anesthesia mask over my face. The doctor tried a few methods to make things easier for me, and while I don’t remember how I calmed down enough for the surgery to be done, I do remember my mom saying that in the midst of my hysterics, the doctor asked, “What on earth happened to this child?” Being only 4 when I had my first operation, I can’t say for sure what happened that caused my fear, but I do vaguely remember waking up during that one, and I was somehow fully aware of the mask going on my face to put me under again. I think I felt like I was going to suffocate if I breathed in the gas. From there, the fear compounded over the years, and came to include fear of seeing the operating room, fear of my post-surgery life in casts, fear of having the casts cut off because of the pain that came when bending my legs after so much time in a straight position, and fear of the rehab therapy. All of this was rooted in my experiences and nothing could console me. Once I knew an operation was on the horizon, I would dwell on it, the anticipation nearly as debilitating the closer the day came. To this day that fear remains with me, although it has lessened somewhat, as I feel a bit more in control as an adult and I’ve done a lot of emotional release work with my chiropractor, a very interesting process, to free myself from the overwhelming anxiety. No doubt, it will always be with me to a degree. I’m not exactly angry about it, but I do wish I could truly get to the bottom of why it plagues me so I can truly be free of it. If anything, I guess the purpose of what I consider my greatest challenge in life is to share it with people so they know they are not alone if they experience something similar and for me to understand that I am strong even when I feel so incredibly weak.
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I've already shared a bit about the beginning of my journey as a writer and hopeful voice actor on the homepage of my website, but in mulling over topics for this entry, and with the encouragement of a friend, I’d like to go back to the very beginning so you can see how my life experience shaped me into the person at the other end of these words you read at this moment.
The family planning interventions available today were still years away when I was born, so it took my parents eight years to start the journey to parenthood, and I was clearly not willing to wait longer than was absolutely necessary. I arrived, an early Christmas present, weighing all of 3 pounds 10 ounces at 6 and a half months. Mom entered the hospital hemorrhaging and I was born 3 days later. I spent one month in an incubator to allow my lungs to develop and put on some needed weight, with my parents only allowed to look at me. Today we know how vital touch is for newborn babies, and I can only imagine how they must have been felt, struggling to cope with such an early delivery. I weighed just under 5 pounds when I left the hospital. As time went on, it became obvious I wasn’t progressing through the usual developmental milestones, among other things, so we visited a neurologist, who diagnosed me with cerebral palsy when I was nine months old. My dad, confusing C.P. with other possibly fatal neurological disorders, asked my mom, “When is she going to die?” In her matter-of-fact, straightforward manner, something she came by naturally but developed even further as a nurse, Mom told him I wasn’t going to die; but she also knew my future would be uncertain for a time in other ways. So then, what exactly is cerebral palsy? Cerebral palsy is a group of conditions that affect movement, coordination, muscle control, balance and posture, caused by abnormal brain development or brain damage before, during or shortly after birth. It is often the result of a lack of oxygen to the brain or an infection contracted by the mother, and premature birth is a major risk factor for C.P. Cerebral palsy is like a fingerprint – its effects are varied and unique for each person who has it, and depend on the degree of brain abnormality or damage. Symptoms can range from mild to severe, and vision as well as the way a person learns and retains information may also be affected. I’ve only begun to scratch the surface and will explain how cerebral palsy specifically affects me in future posts. Meanwhile, I welcome any questions or comments you may have, and I look forward to sharing more soon. Take care and be well. . It’s an important week in America: We commemorate the life and work of Dr. Martin Luther King, Jr., prepare for the inauguration of a new president and, of particular significance to me as an American living with cerebral palsy- honor the International Day of Acceptance- where we raise awareness about people with disabilities. I would love to share my thoughts with you.
Like everyone, I have been trying to make sense of the overwhelming convergence of social and political unrest, on top of this unprecedented pandemic. Can we ever get back to the place where we can truly gather together safely and share our beliefs and opinions without fear, hatred or recrimination? I believe we should all be able to express ourselves freely, without censorship and without hurting each other; I don’t think there’s just one answer as to how things have gotten so out of control. People will place blame where they will, but placing blame isn’t constructive. Working together for understanding, acceptance and solutions is a tall order, and when the people in the highest offices in the land can’t come together to repair our fledgling republic, to bring back the principles on which we were founded, it’s difficult to see what we can do or why we should bother. Why should we bother? Because it’s the right thing to do. Because if we don’t, who will and where will we and future generations end up? We are, or should be, better than what we have become. We have collectively lost our basic sense of decency and the ability to communicate civilly with one another. For that we have no one to blame but ourselves. We are responsible for our own actions and reactions. It’s time to reflect on our roles in creating the problems and to work even harder to be part of the solutions. Do what you have to do, within reason, to achieve that and, to paraphrase Mahatma Gandhi, be part of the change you want to see in the world. The statement ‘In a world where you can be anything, be kind’ has gotten a lot of lip service in recent years, as have similar social media posts. It all sounds great, but are we really taking it to heart in our lives and our society? Overall, I think not. If we were, how much of what has corrupted our core values could have been prevented? It’s something to think about. Hello! I am somewhat new to the blogging world, although I did start another one a few years ago, but it only lasted a few months. Interestingly, I started that one at the beginning of a new year, too. You may be wondering, why the return to blogging now. I wanted to create a place to share my thoughts on and experiences with writing, living with cerebral palsy, voice acting, favorite books, and life in general. A dear author friend took that idea further and suggested I create a full website for greater visibility, which is ultimately how you came to be here. The site would not be what it is without her invaluable knowledge and help -- and her beautiful headers! Thank you, so much, D.L.!
My novel, begun 2 years ago, is at a bit of a standstill right now. COVID, writer's block and the recent death of my father have all contributed to it being on the back burner, but I have not given up on it by any means. It is about a woman with cerebral palsy trying to build a relationship with an able-bodied man. I started a Facebook page for it about a year ago, too and have decided to revive it as well now that my life is settling down a bit. Voice acting is another new venture for me. I've loved audio books for years, thanks to incredible narrators who make you feel that you are part of the stories, and I've often thought in the back of my mind how cool it would be to do that. Last year at this time I began the journey to make the dream a reality. I've taken classes and am working on getting equipment to set up a simple home recording studio. Then comes promotion! In the meantime, I'm extremely grateful for the guidance of another terrific friend who is a star in voice acting, and I will continue to practice, practice, practice. I can't thank you enough, Troy! I'm open to any questions and comments you may have about most anything I share; however, I will say, I am not here to debate, nor do I want the conversation to become heated, adversarial or mean-spirited. What I share are my experiences and opinions and mine alone. I ask that you please respect them and me, as well as anyone else who may contribute here. Anything I write which expresses facts or statistics will be backed up with a source. I also welcome your suggestions for future blog topics and look forward to getting to know all of you. Thank you for spending time here. I wish you all the very best in 2021. Hopefully we can all come together to make the future a lot brighter. Be safe, well and sensible. I'll talk to you all soon. |
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