My wonderful cousin Kathy has been busy writing again. Today she is sharing a very special story of what life is like in her shoes. I feel this is a very important story because all of us who do not need a wheelchair really have no idea how life can be so different than what we know. From getting up for the day, arranging transportation,and finally getting out the door, just a quick trip to a grocery store or a doctor appointment can turn into an all day event for her. And that is just one small example of how her life is so different from mine.

What strikes me about her is how she deals with so much and is determined to remain kind and gracious through it all.  As Kathy journeys through her daily life she often meets up with individuals who really lack understanding of her situation and it’s unique challenges. This includes, sadly,  counselors and other professionals who ought to know and be more compassionate and understanding. Kathy in her own quiet way would kindly try to explain her unique situation but that didn’t always help. She would be searching for kindness and understanding from others and not receive it. Now, she decided to write about it and share her story with us. I hope you enjoy reading and learning from her perspective in daily life:

Rolling in My Shoes

            Most infants born in 1964 did not make it if they were over two months early. There were no such things as neonatal intensive care units or drugs to help the development of the lungs even after birth. To put it into perspective, a baby boy who was born the same day as me, but he died; yet, he was only six weeks early. Today, preterm babies born at either of these stages of pregnancy may not have any sign of disability at all. However, fifty years ago, I went into respiratory distress at six days of age. I never moved my legs inside the incubator again. Prior to this, I had been extremely active inside my glass cocoon. Procedures were so different then that my parents were not allowed to interact with me at all. I could not even hear their voices, let alone feel their arms holding me. In fact, I knew no human touch at all until I was ready to come home six weeks later. At that point, I was almost five pounds, and the hospital nursery was full of infants. That period of history between 1946 and 1964 became known as the baby boom generation, so my parents were allowed to bring me home sooner than they would have otherwise.

My parents were told that I would be behind in my developmental milestones by about three months compared to other full term infants of my age. Surprisingly, I met my milestones at the same time as other babies. I even said “Da Da” at about five months old. Mom noticed however, that I was not trying to roll over or sit up. When she tried to sit me up, I would topple over immediately. At about nine months old, I was diagnosed with Cerebral Palsy. How frightened my parents must have been as my future became suddenly very much up in the air. All they could do was wait to see I could and could not do for myself.

Cerebral palsy is also referred to as CP, is a term used to describe a collection of chronic conditions affecting body movement and muscle coordination. It is caused by damage to one or more particular sections of the brain. This usually occurs during pregnancy; before, during, or shortly after birth; or during infancy. These conditions are not caused by problems in the muscles or nerves. Instead, it is caused by the defective development or damage to the motor areas in the brain; this defect disturbs the brain’s ability to control movement and posture (how well one sits or stands upright).  Cerebral Palsy is also known as a developmental delay and/or disability.

I have the most common type of CP called spastic CP. This causes me to have too much tone or stiffness in the muscles. I also have mild tremors in the legs and feet. While some people walk with an uneven gait, I have little ability to maintain my balance, so I use a power chair. This means that I need help with some Activities of Daily Life, (ADL’s); these include getting in and out of bed, dressing, showering, and toileting. I also need help with some Instrumental Activities of Daily of Daily Life or (IADL’s). These are more complex skills of living. In my case, I need help with shopping, public transit, home chores, cooking and medication management.

Caregivers assist me to have the best quality of life possible. I have had to learn some patience; it is not always easy to exercise patience especially when I am in a hurry to accomplish something. My husband is my primary caregiver; he has known me since I was a teenager. One of the most important life lessons occurred to me not long ago. Grace has to be an important part of my life. In order for people to want to help me, I must show appreciation to those who go out of their way to do so. It takes a great deal of grace and empathy to give and receive help; it is very much a reciprocal relationship. I pray for those who deal with me on a professional level that they would have some compassion for my circumstances and realize that my circumstances are at times imperfect.

There are extra challenges in rolling in my shoes! Have you ever noticed the sidewalks that suddenly end, causing me to go the long way around to get to my destination? What may take someone less than an hour to visit the store may well take me most of the day! Busses or specialized transport may take hours, just to pick me up and drop me off depending on the schedule. Yet, I am usually less than a fifteen minute drive away from home. Don’t get me wrong; I am very glad to have access to these services, but there may be valid reasons why I may I not smell as fresh as a daisy or I may dress for warmth and comfort rather than dressed up for the office. How does a person like me get a complete medical examination when I am unable to put myself on the exam table? I have a Hoyer lift at home, but I am not allowed to bring it on public transport; it is far too big and top-heavy to be safely transported. It becomes a liability issue. The hospital is often my only option for a more complex exam. All of these issues require planning ahead and good time management. Next time, you encounter someone with a disability, please do not criticize him or her, and bless him or her by offering some compassionate grace!

A day in my life contains little spontaneity; as much as I would love to just decide to do something at the spur of the moment, it is rarely possible. Most of my day follows an outline of a plan. This is not to say that every moment is scheduled, but if I want to do something more than a mile or so from my home, I have to usually plan for it. The reason for this is the rather limited battery and speed of my power chair. At top rabbit speed, it only goes at six mph. After going a few miles, the battery loses power quickly. As much as I love my chair and the independence it allows me to have, the chair is very heavy – about 3-400 lbs. without me in it. This means that it an exceptionally strong person to push it more than a few feet after the pusher puts it into manual drive. This totally disengages the power, and it is up to the not so lucky person to push it. Fortunately, it has never broken down outside my home, although it is a fear of mine because there is no Triple A for people in chairs.

As I explained earlier, I also need help to get up and get cleaned up for the day. Often, I need a shower. My caregiver and or my husband use the patient lift to transfer me from the bed to the shower chair. My helper(s) push me into the bathroom, attaching the shower chair to the gliding system. One lifts my legs over the side of the tub while the other slides the chair and me over into the tub. Once the shower is done, the wet sling has to be exchanged for a dry one, and the lift is used to transfer me onto the bed. This is where I get dressed for the day and my catheter is tended to etc. This entire process takes about an hour including using the lift again to place me in the chair.

If I have a scheduled appointment, our disabled transportation system requires me to be ready an hour before my appointment time, longer if I have to go outside of my city. Once I complete my appointment, I have to call the dispatcher to pick me up once again. This could take up to another hour. According to their schedule, there is often others to pick up or drop off on the way home. It is often faster to take the fixed route bus home! But I do run the risk of others in wheelchairs already using the allocated spaces. If this happens, it really puts me behind. I have to plan to leave with time to spare in case I get held up for any reason, even a late bus. Sometimes, my incontinence becomes an issue, especially if I get delayed at all. I take steps to minimize the risk, but there are times it cannot be helped.

My life and well-being depend very much on the reliability of others. However, I am luckier than most in my shoes because my husband is usually available to pick up the slack if a caregiver cannot be with me. Knowing that my success as well as my good health relies so much on others is not easy for me. Good and empathetic caregivers are as difficult to find as gold nuggets. Low pay and burnout are frequent problems. Due to tight budgets, aging baby boomers and the fact that people are living about thirty years longer than they were 100 years ago, this will most likely continue to be a problem for decades to come unless solutions can be found. However, that is a topic for another day.