Ask Why: But Not Why Me?

By Kristy Mandigo

Believing that the grass is greener on your side of the fence. Throughout Kristy's life, she was told "No" or "You can't do it. It's not possible" or "You are not (blank) enough. Kristy is determined to make the impossible possible. Kristy uses the negative and made it her motivation. Her journey started by growing up on a dairy farm and believing in God. She knows that failure is a part of her, but never quitting gives her strength. Staying busy and fixing technical problems is her passion. This book shows how her life has given her strength and leverage through the struggles of becoming independent and empowered. She has learned that accepting help is not a weakness. Kristy stands by her belief that it is okay to always ask God and others "Why?" but not "Why me?"

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: Aug 1, 2022
• ISBN: 9781646284641

Book preview

Chapter 1

So It Begins

From the start, Mom and Dad suspected that something was wrong. I was the firstborn, and the doctors didn’t see anything to diagnose. In fact, it wasn’t the doctors that diagnosed without a little push. It took until I was two! The indicators were that my eyes didn’t track together, and there wasn’t symmetry with my hand usage. My left hand was more fluid, whereas the right was more ridged and it was always a beat behind. I might have been a baby, but I was strong. I held on tight and wouldn’t let go. Even at age two, I was a force of nature.

Mom and Dad talked to my aunt Val when she came to visit. She forcefully encouraged early intervention instead of allowing the doctors to intervene late. I can’t tell you how many people I have talked with in my adult years that missed out on intervention. It is hard to hear. It is not always the system. Sometimes it is the support from family and community for, because the pain to fight is too much. I am here to tell you that every day is a fight with a smile. Early intervention created complications and expense for so many resources, both public and private. In addition, our family lived in a rural area, so it increased the complexity. Over the course of this book, there are things that will break your heart and others that will make you laugh and smile. I never thought I would be where I am today, because others didn’t believe in me or because I didn’t believe in myself. However, at an early age, I started to believe in math, science, and in God. I came to believe that I am here on this earth for a reason. That reason is a mystery to me, but maybe not for you.

* * *

My mom told me it was a warm, hot day and I was playing with some block that Grandpa and Grandma made for me. Aunt Val and Mom were drinking lemonade. I was playing with little regard for anyone else. My aunt watched me play and expressed her concerns. Look at her. She is only using her left hand, and she is in her own world. Why doesn’t she use her right hand at all! It just flails around! It flails, Marilyn! Don’t wait on this, take action, and don’t let the doctors be relaxed about the treatment.

Daddy walked in with more refreshments.

It wouldn’t hurt to ask them about it. I think we need to get Kristy checked out.

My mom responds, Yeah, but if the doctors are not concerned, then what?

My aunt continued, Just here me out. Her eyes are wandering, and I already mentioned her arm.

My Mom countered by saying, So does mine! I am sure she will need glasses just like me. I hoped she would get Dan’s eyesight, but maybe this one will, motioning to her belly, Danielle, my sister. The pediatrician said I was strong and was able to pull inward.

My aunt looked at me but was talking to my mom. Marilyn, she favors her left hand. Look at her hand. It is clenched like she has a toy in it. It flails with no purpose. Maybe she is fine. She bent over to open the right be for hand—there wasn’t a toy—but shrugged.

My mom looked at my dad and stated, I think we all agree we can’t let the doctors decide if our daughter is okay. The pediatrician thinks Kristy is fine, but we need to find a doctor that will listen to our concerns.

Later, my parents would find out that it was because I was spastic. My parents continued the search and process for some answers. They went from second option at the vocational rehab clinic. Shortly after, we were sent to a neurologist.

It took several months to get an appointment with the neurologist. During this time of waiting, my sister was born. It was hard to wait for the appointment. The appointment finally came, and they gave us the diagnosis. The diagnosis was that I have right hemophilia spastic cerebral palsy. After the diagnosis, it continued to be a challenge to find and schedule therapy appointments. They treated me for about a year with therapy, and they watched me closely. I was going to the center daily. I then started to taper off from daily to three, and then two days a week. I was three before deciding to conduct surgery; my unaffected areas were progressing much quicker than the affected areas. This created the abnormal mobility. There were also issues with the static position of the affected areas. This created difficult walking and using my right hand. The position of both made it dangerous for me to walk without falling. I tended to walk along walls to decrease the falls. The falls continued to get worse, and my unaffected areas grew. The amount of exercise and therapy wasn’t compensating enough to counteract the falling. The decision was made to schedule the surgery.

The surgery lengthened the Achilles tendon to orient my foot to a normal position, which decreased the under toe and created a safer walking ability. I was only three and had to stay lying down for weeks. I remember the torture. I had hateful thoughts and was angry with all the pain. I kept hoping I will forget those days on the couch. Letting go of painful thoughts are important, yet my dreams keep that time in my life alive. The one part of that time that makes me smile is the scheming, plotting, and the imagination. Imagine how a scheming, plotting, and imaginative little girl confined to a couch operated. Let me tell you, it was I am sure I was entertaining but also a handful. My sister was only six months old, so between the two of us, we kept my parents busy. I remember trying to get off the couch, and my mother nearly lunging, saying, Kristy, stay where you are. You need to stay where you are. I know it is hard, but I need you to stay where you are.

I remember being frustrated, itchy, and wanting to be a part of everything around me. I felt like I was missing out and time went by so slowly. I mean really slow. Plus, my baby sister was, well, my baby sister. My sister was little and cranky, but at my age, I felt like she was getting attention, and I was stuck. I was in a lot of pain, and I couldn’t explain, nor did I understand it. I was born this way, so I didn’t know my life without it. I just knew I didn’t like it. Getting attention was a great distraction. Little did I know that in three more years, my brother would arrive, and I would need to learn how to cope.

From the beginning, my life was hard—a struggle, a flight—and I had to choose to fight. It didn’t matter how many cheerleaders I gather or how many people were convinced that I would fail. I had to choose me. I had to choose early and often. Each choice gave me more choices. With cerebral palsy, there is a timeline before things just stop working, and the internal damage was difficult to regain. Feeling sorry for myself was not an option. I choose me, and I was on the path of tough choices. There were about one out of thirty-three babies in the United States born with a disability from minor to severe.

My parent had to arrange doctor’s visits and educational meetings. We often laugh, almost to a cry, because years later, looking back on them, the stories seem unreal and horrific. It is better to laugh than cry, my grandmothers would tell me. I live among wise and strong relatives. My bloodline is strong and much of my success comes from the belief that I was born for a special reason.

The rest of this book is a compilation of stories about how I have persevered and overcome my struggles and also about areas that are still ongoing struggles.

Most of all, I embrace the concept of asking why but never asking Why me?

When I was older, my parents told me about this discussion, and I wrote it down to remember how lucky I was to have people fight for me when I couldn’t fight for myself. It must have been difficult for my parents to find a doctor that would listen. It is hard to believe that a doctor would say that I was okay knowing my conditions. My conditions will be revealed throughout this book. Many of them have shaped me and those that support me through my journey and fight for survival in this harsh world. There are times that I feel guilty that I had early intervention, yet millions of other children don’t, for one reason or another. It is easy to help others and solve problems for others rather than helping myself. It doesn’t stop me from working harder, regardless of the environment around me.

* * *

Growing up, I mostly wanted to prove the world wrong. It gave me strength and a carrot to continue fighting regardless of how much physical and emotional damage that it caused along the way.

Physical and occupational therapy was and is a necessary evil. Most go out of obligation and only do the therapy during the sessions. At a young age, it was a stigma I carried around. I was late for school because I was at therapy. I was too busy to play because I was going to therapy. Many thought it was a way to get out of regular school or commitments. I later found ways of incorporating exercise into everyday activities, and took up hobbies, that would allow me to enjoy time with my kids and get therapy exercise at the same time. It takes commitment to maintain mobility with a chronic condition. Having a chronic condition is different then an injury in that you are trying to regain mobility that you once had. With a chronic condition, you are often fighting to maintain the condition you are in, and often trying to find better ways to use other body parts to be creative and complete other functions that might be unique to you. Others judge people that are unique as crazy or weird. I find myself believing that I am crazy and weird because I am told so many times in passing. I adapt to the world around me. A good example would be opening a door with your feet or driving with only your hands. It is amazing what people can do.

It takes commitment and creativity. It also takes someone’s patience and willingness to stand tall even when they are persecuted or harassed for doing something that they judge to be crazy. Christy Brown, who had only use of his left foot, proved the world wrong by becoming a writer and artist. There are others like Christy that have become well-known and have given me perspective while I was growing up.

Along with therapies, I also have several learning disabilities. I was often mistaken as dumb until tested. I tried to convince myself that I wasn’t dumb or a retard. Yet, every time I was called a retard, it stuck, and all the hard work, I did to convince myself, was wiped away. It was like a whiteboard and I was left with my evil thoughts. As you can imagine, it was a stigma, especially in a small town. I would leave mainstream class to go to the learning center. I would take my test separately. I would have tutors, and my homework took hours. I maintained hope, as my hero Einstein had learning disabilities too. I always had heroes. My parents also found people for me to look up too. The funny thing was that I looked up to them more than any they suggested. I know in my heart that it was hard for them to raise me.

I never found a person that had the same path or passion that I had, but I found comfort in my heroes and continued on my path of proving the world wrong. I was so busy proving the world wrong. I had no one else to compete with. I couldn’t find anyone to challenge me. Even in my adult life, it is hard to find the fire that I have within me in others. The fire in me never goes out. I am contently learning, contently stretching, and contently uncomfortable. Nothing is too hard, and nothing is going to stand in my way. The little voice inside me that I will fall is alive and strong, telling me that I am worthless, and I am crazy for thinking I can be someone, but I ended up pushing it away and finding my next challenge. Sometimes, I find my evil self say, Who is the retard now! I have no one to tell because I look around, and the retard in the room doesn’t exist. It seems like a figment of my imagination. It was a lifetime ago when someone would dare call me dumb or a retard. The scars remain, and healing is hard. I have found that putting in the time to heal is so rewarding. Writing this book has not only been a motivation to help others but also helped myself process the past and heal.

Sometimes proving others wrong is not enough, and you start reflecting on your life.

When you look at your life and feel broken, it is hard to shake the feeling. I learned to find a way through the darkness. Sometimes the darkness rolls back in and I have to literally phone a friend.

What are you chasing beyond the clouds?

I am contently chasing something, thinking I will be less broken. It is often learning a new skill or being able to achieve some physically difficult activity. This is an area I struggle with.

I have a deep belief in the Lord Jesus, and even with my understanding that He is the only way, truth, and light, I still feel that I am here to live my life and not waste it. I find that if I am not reaching for the clouds, my brain and body will atrophy. I am scared that without working harder each day, my broken body will be for naught.

I am often confused and wonder what my life story would be without the broken body. I continually strive to be less broken, and it gets tiring, and some days it gets overwhelming or too much.

I have a strong appreciation of God’s love for me. I know that He loves me unconditionally. Friends have a hard time with my situation after a seizure or a fall; they don’t need to tell me; it is written all over their faces. It is a comfort to know that God is always there, and he knows, and his face is always consistent. People don’t mean to put their distance, but it happens.

I can be overwhelming when I get scared, or when my OCD gets a little out of sorts. People often move on or get busy. It is always easy for me to keep my distance. It is hard enough for me to handle change because my life depends on it. I must control my environment. I can’t control my friend’s availability, which impacts my environment by default. Regardless, God is consistent, and I have to believe that He understands my behavior always, even when I am confused about myself. I also know that He is not punishing me for anything that I have done. However, I have the feeling that I must continue to honor Him, by pressing forward and never giving up. I know giving up on myself is not an option. I have been told that I was born in His image; however, I have a hard time rationalizing it—until I achieve something, and it only lasts a few hours/days until something happens to shake my intellectual or physical abilities, and the cycle continues.

The opinions of others used to plague me, until I chose not to care what others thought of me and only caring about those that I look up too. I am an addict of approval not for others (that would be too simple) but my own. My self-worth has always been a struggle. My self-worth is a combination of ability, perception, and beliefs.

How you define your own self-worth is different. I would challenge you to sit down and write it out.

For me, my intellectual abilities rate much higher than my physical abilities, which makes sense. I also don’t hold others to these standards. My ability is mine alone, and it defines me. I strive to work harder than everyone else in the room. I know that I need to work twice as hard because I am a female in a man’s world, and four times harder because I am different. I have to work hard enough so that the perception of others is that I am an equal. They don’t see my physical abilities or my intellectual abilities, even after they noticed I can’t have them be a weakness. I don’t want them to be a barrier. I want them to be a strength. I want them to go away, and the real me to be seen. The real me that I dream about. The person that is running through a field of sunflowers with a friend. I am not a man or a woman. I am not white or any color. I am a shadow. My friend is with me running toward the light. We are running toward God and our families that believe in us always. In my dreams, I can never see me or my friend, only the shadow. My self-worth centers around my belief and my strength in God and how important it is for me to balance the craving of being significant and worthy on this earth. I have a hard time believing and trusting others. There are many self-help books that often combine the two, and it is hard for me to read as I know God loves me. He has to. I was made in his image. It is the earthly world that I constantly struggle with, and I have a lot of questions for God, but I struggle with self-abilities or the lack thereof every day. I am constantly reminded of rejection, shame, and pain.

All these areas started becoming more scientific to me. Instead of trying to get better or trying so hard to be normal, I started treating everything I didn’t understand like a formula. I started studying human behavior and becoming someone that could adapt into normal society (most of the time). This was important to me, because I wanted to be independent and hold down a job. I became good at learning what motivates people and hide in plain sight. The rest is hard work, grit, and failing and getting back up and trying again and trying again after that. My solace is the believe that my sunflowers every night will come for me, and they are a present from God.

Chapter 2

Learn to Laugh at Yourself

When I was working on an assignment, there was one computer that had a shared password to a scanner. The computer maintenance person gave me the password, letter by letter, over the phone, and I typed the letters as he provided them to me. To understand the rest of the chapter, you will need to have a few facts. My brain and my muscles (including muscle memory) don’t talk together. One is on Mars, the other is on Venus, to give you some perspective. It is a constant struggle to get them to talk together and cooperate. I often sense my body is at war. Which side will win? Okay, back to the story. I was getting a password.

I made a mental note: REDROVERREDROVER. I wrote the password in my notebook and thanked the person. I used this password every day for about three months with no problems.

I was going on vacation and handed over my tasks to an assigned backup. The backup looked over my notes and tried signing on to the computer. She typed in REDROVERREDROVER, and an error message appeared. She was puzzled. She tried it again with Caps Lock off. It still came up with an error. She tried it a third time, and again, she got an error. It locked her out for thirty minutes. She came to my office very frustrated. After the thirty minutes, we went to the computer together. I was trying to wrap things up before my trip, and this was a distraction, and I was frustrated. My notes were always very detailed and had step-by-step instructions with screenshots and quick tips. I honestly know few people that come close to my instructions.

The backup tried the password in front of me, and an error popped up.

Both of us were short on time, so I reached over and typed out, REDOVERREDOVER. There was a long pause. The scanner started to work. What I failed to miss was that I typed the correct letter, but my brain didn’t talk to my fingers.

I looked at her