Baby I was born this way…

Now that I have your attention, let’s talk a little bit about children that are born with a disability. “According to the March of Dimes, about 150,000 babies are born with birth defects each year in the United States.” Unless you happen to be lucky enough to live in a perfect world, which I do not, you more than likely know at least one family that has a child with a physical or intellectual disability. Often the child will have both.

There is a group of mothers at my church, with disabled children, that formed a ministry in order to support, help and encourage each other. The name of the group is “Moms In Holland.” The name was thought up from an amazing description of how a mom feels when she has a child born with a disability. Rather than me attempting to explain it and mess it up badly, read the brief and beautiful analogy by Emily Perl Kingsley.

WELCOME TO HOLLAND

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

After reading what Ms. Kingsley wrote, there really is not much more for me to say. A disabled child in the home will bring new challenges, extra work, heartache at times but so much beauty and love also. Do not miss out on the incredible love that a disabled child can bring into your life, because your focus is on what you don’t have, rather than on what you do have – a child who loves you unconditionally and only craves that same love in return.

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Under Pressure

Life is filled with many pressures – family, jobs, relationships, etc. Now couple any of those with a disability, and the pressure rises exponentially. Many disabilities even have a special pressure of their own, known as pressure ulcers or bedsores. These pressure ulcers can be very dangerous and affect every aspect of a person’s life.

You can Google pressure sores and read in great detail about what they are, the many causes and how to care for them. Speaking from personal experience, I had one on my left ischium that lasted about 8 years! During that time it would go from bad to good and even close up numerous times. My doctors were always watching it and had me try many different types of treatments to heal. Of course I knew the greatest reason why it would not heal completely is because of my stubbornness. One of my doctors once told me something that I’m sure applies to all pressure sores. He said, “You can put anything on a pressure sore to heal it except yourself.”

I was told that I needed to stay in bed until it healed. Sounds easy enough right? Well, it certainly was not easy for me and probably not for many others as well. I developed the sore when I was in rehab (long story) and when I left rehab, my life was not idle. Staying in bed for three months was not at all practical for me. I was married, had two small children, a home to maintain and I went back to work part time. I knew that I was supposed to do lifts in my wheelchair about every 15 minutes, but I didn’t. And then a year later, I went back to school full time. I did not have time to stay in bed or the patience to worry about doing pressure relief lifts.

Then two years ago I was forced to stay in bed for about three months because of some other health related issues. And guess what! My pressure ulcer healed. However, because of me not taking proper care of it in the beginning, I lost muscle tissue in the area. So now, if I am not extremely careful, the same spot is very prone to opening up again.

My argument to the doctors was that I do not have the time to stay in bed. To be honest, I still have that argument, and I think it is a legitimate argument.  Just because I am disabled does not mean that I do not lead an active life. Busy is good. I have no intentions of sitting on the sidelines while the world rushes by. And let me be the first to encourage everyone with a disability to get out and live life!

The key here is to live life wisely. My doctors and therapists were telling me to do pressure reliefs for an excellent reason. If I had listened to them in the beginning, my sore would have healed much faster and prevented a lot of hassle for me. Bandages, ointments and wound care clinics could have been avoided. I had to pass on many opportunities to try new things during those eight years because I made the poor choice of not taking better care of my health.

Let me encourage anyone who battles pressure ulcers to listen to your doctor. Yes, get out and live life to the fullest! But do it wisely, not foolishly. Take care of an ulcer when it is small before it develops into one like the picture at the top of this post.

Pressure is never easy, especially when you are sitting on it.

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Attitude Matters

When I was working on my undergrad in biblical counseling, one class that I had, Sociology, required some field work. I had to choose a topic that meant something to me in a personal way – I chose handicapped parking. Since it was a research project, there were many variables involved that I won’t bore you with, but for the overall project I parked my van in a regular parking area where I had a good view of two handicap parking spaces. Both of these spaces were located front and center to the entrance of a post office.  It was a high traffic area and parking was limited. I sat for two hours counting how many cars parked in the designated handicap spaces, were the vehicles marked in any way for disability parking and how long did the vehicles remain in the parking spaces.

The results did not surprise me as I’m quite sure they would not surprise most of you. Needless to say there were a high percentage of very able bodied people (running into the post office) who parked illegally in both spaces.

Most of you are probably thinking at this point that you know where I am going with this post. “How inconsiderate of people!” But that is not where I am going. Many people are inconsiderate about many things, and no handicap parking sign, blog posts or legislation is going to change that. I have no control over others and what they do, but what I do have control over is my attitude.

When I “cop a bad attitude” the only person that I am hurting is me. Why should I let other people around me determine how my day goes or how I feel? If you are disabled and reading this you may be thinking, “Hey, wait a minute, the American Disabilities Act is law, and I deserve that parking space and am entitled to it.” Yes, the ADA is law, but I am entitled to nothing. Did you catch that last word? Nothing. I watch people around me, disabled or not disabled, going through their day in a disgusted attitude because they believe that they are entitled to something they did not get. And yes, I am as guilty of that as much as the next person. Then I realize that my entire day just got ruined, not because of inconsiderate people, but because of my bad attitude toward a situation that I have little control over.

We live in a society now that screams and shouts, “You owe me!” I was injured while working in the Air Force Reserves and receive VA benefits. I am very thankful for those benefits, but I also realize that even though this country considers the VA to be an entitlement program, it is not. In many countries around the world, disabled people are living in horrible conditions due to no fault of their own. I have done some pretty extensive traveling and met some of those people. I have seen people in conditions I could not imagine, yet they meet me with a smile and a thankful heart for just a visit. And I get grumpy because I can’t park 10 feet closer to the front door at Walmart to go inside and buy something that I could live without? Now talk about needing an attitude adjustment!

Regardless of how others may or may not act around me, the one thing that I am always in control of is my personal attitude. So yes, while keeping a positive attitude, I should work to bring awareness to others, and encourage everyone to be considerate and obey the law. But when I meet inconsiderate people, and start to argue, or throw out lawsuits like candy, I accomplish nothing but creating division and bitterness in my own heart. I don’t know about you, but I plan on living my life with a smile and a thankful heart.

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Are you #1 in your #2 business!?

I feel like I should start this post with a disclaimer. I wrote this mainly for people with paralysis. It is good information for everyone to have, in order to understand what paralyzed people go through on a daily basis, but my target population here is paralyzed people. Not that there is anything of an obscene nature involved, but nonetheless, I am going to briefly talk about something that is not usually discussed in polite company – Bowel Care.

I clearly remember when “bowel care” became a very common term for me. I had been in the ICU for a few days when it crossed my mind that I had not been to the bathroom since my injury. I lay in my Stryker bed, not being able to move or feel anything, and thought, “Oh no! I haven’t been to the bathroom. What do I do now?” I got Wendy’s attention and whispered my concerns to her. She just smiled and said, “Oh trust me, you have had a bowel movement…several times in fact.”

After the shock of what she had just told me had worn off, I thought, “Well isn’t this awkward.” Not only had I been going to the bathroom, but nurses had been cleaning me up and I didn’t even know it. So being of the inquisitive nature that I am, I asked for one of my nurses and started asking questions. The bed I was in had a trap door (how convenient) that was used to handle bowel movements, and I had a Foley Catheter in to keep my bladder empty.

My mind had many questions, but until I reached rehab there was really no point in asking. Three weeks later, when out of the ICU and in rehab, I started learning my bowel regiment and how to use a catheter. Everybody that is paralyzed will differ on how this is done, so what I describe is what works best for me.

For my bowel regimen I use an Everest Jennings Shower Chair with a padded seat that is closed in the front. It works just like my manual wheelchair allowing me to transfer onto it and push myself into my bathroom. I back up over the commode with my chair and do not need a raised commode. In therapy I was taught how to perform bowel care with digital stimulation, using vinyl gloves, lube and a bisacodyl suppository.  I personally have no feeling at all when I have to go to the bathroom for either a bowel movement or to urinate. So I now go to the bathroom on a time schedule, and I have to allow quite a bit of extra time when getting ready.

In therapy I performed bowel care each morning and did self catheterization approximately every 6 hours. I would say that this is one of the most difficult aspects to become accustomed to for a disabled person. There are so many outside factors that can affect a routine. After I was home, I switched my bowel care to every other day which worked best for my schedule. I still perform self catheterization about every 6 hours depending on my fluid intake. I am very fortunate that I do not have great difficulty with this and am able to change my schedule when necessary without negative consequences. Many are not so fortunate.

As I stated at the beginning of this post, everyone will be different. I do a lot of traveling and have to vary my routine quite often. Many people are not able to do that and need to keep very tight consistency to a schedule. If you feel like this is a hurdle you will never make, hang in there. You just have to find what works best for you. Talk to your occupational therapist or physician and discuss options. I have included an article here that has some good standard information for all of us. http://www.sci-info-pages.com/bowel.html

Do not let going to the bathroom hold you back from living the life that you want to live.

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I’ll Do It My Way!

I was talking with a friend of mine last night, who is also in a wheelchair, about the different ways that we do many daily activities. His spinal cord injury was four years ago and mine was 15 years ago. We both went to rehab centers that specialize in spinal cord injuries, so we should have been taught to do things the same way…right? Wrong.

Even if he and I had gone to the same rehab center, at the same time, and had the same therapist, we would have left doing things differently. Many factors come into play here such as level of injury, age, height, weight, agility, etc. In our case for instance, he is 26 years old, and I am 51 years old. He is going to have more “get up and go” in the way that he does routine tasks than I do.

It would be no different than the way two able bodied people approach a task. Each would do what works best for him or her. Disabled people can fall into the trap of thinking, “I have to do something a certain way because I was taught to do it a certain way.” A good physical therapist is going to know many ways of doing things and realize that each patient is different. There may be a “preferred” method, but that doesn’t mean it will work best for me.

One of the things that my friend and I talked about was how we transfer in and out of vehicles. He has a mini-van just like I do. He does a transfer from his wheelchair on the ground into the driver’s seat with the aid of a slide board. When he transfers, he puts his legs in first and then pulls the rest of his body in after. I don’t have to transfer into my van since it has a fold out ramp on the side that I use. But any time that I do have to transfer into a vehicle, I pull my wheelchair up to the open door, grab the top of the door frame with one arm and the top of the door with my other, lift and pivot my body into the seat and pull my legs in last. I also do not use a slide board. So, he and I basically do the same task completely opposite.

Does that make either of us wrong in the way we do things? Of course not. We have learned what works best for us, and we do it. He was helping another friend of his that was having difficulty with transfers. When he showed him how he did it, and offered a few suggested changes, his friend was able to transfer much easier and faster. Over the years, I also have been able to suggest different ways to approach tasks, which has helped people. We can learn much from one another.

As a disabled person, learning how to redo every task in our life can feel very overwhelming at times. In therapy I had to learn how to re-live. But when I left therapy and went home, I also learned that I needed to make some personal choices and adjustments to the way I had initially learned things.

So the greatest lesson that I left therapy with is that there is not just one way to do things. Study, experiment, ask questions and don’t be afraid to listen to new advice on how to re-invent your wheelchair experience.

 

While always keeping safety in mind, you can learn to do the impossible.

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Patience Is NOT my virtue!

I want it done, and I want it done yesterday! That, unfortunately, was the way I looked at most things in life. That attitude, for anyone, is not the best way to approach people or projects. Prior to my injury, if I wanted something done, I could do it myself. After my injury? A totally different story.

Attitudes do not change overnight. Appearance had always meant a great deal to me, so I was very particular about the way anything looked that involved me – our home, my job performance, even the way we dressed and acted in public. I slowly began to realize that my requirements were not as important as I had always imagined. The ways I thought, and how I wanted everything done immediately and just so, was nothing more than arrogance.

I quickly learned that other people were marching to the beat of a different drum. My pace was about five paces ahead of others around me. Wendy and I use to hold hands walking. I say walking, when in actuality, Wendy was being dragged something close to a canter. I thought fast food places were clueless as to what “fast” meant. And if you really wanted to see me start twitching and having seizures, send me to the DMV to renew my license!

But there is no teacher quite like a disability to help us learn patience. If I am unable to do something, I now wait until someone else can help me with it. And, being the loving husband that I am, I was informed (fairly nicely) that my wife Wendy was not the solution to all of my “need it done NOW” items.

The important thing here to remember is that a lack of patience with people around us is just going to cause strife, friction and frustration. Me staring at a burnt out light bulb on the ceiling, and getting frustrated because I can’t change it, accomplishes nothing. And when I express my frustration, or lack of patience onto others, I only succeed in creating damaged relationships.

A key factor here for me is to focus on what I can do rather than on things I cannot do. I will start working on projects and do as much as I can, patiently waiting for someone else to help. And you know what I discovered? Things still get done. The world continues to turn, the sun rises and sets as always, all without me rushing it and thinking I could do it better.

So as a disabled person, let me encourage you to stop rushing. Find a quiet place in your life where you can relax. Don’t just look at the people in your life, but actually take the time to see them. If I have a bad attitude and lack of patience with people and things in my life, I will infect others with that same bad attitude, and create a most miserable life for everyone I come in contact with.

 

Learn the virtue of patience, and with it, the sweetness of living.

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Therapy Schmerapy…

I hurt. I’m tired. I’m disgusted, and no I do NOT want to do 5 more reps! I felt those feelings so many times during the first 6 months after my injury. The therapists also heard me express my feelings on numerous occasions.

I hated therapy. When I was in the hospital, I just wanted to be left alone. Six days a week I had physical therapy twice a day, occupational therapy once a day and swimming for an hour each day. “What’s the point?” I thought. I’m never going to walk again. I’m never going to feel again. Just put me in my wheelchair and leave me alone.

Slowly…very slowly in my case…I started to understand the benefits and necessity of therapy. If I wanted to regain any form of independence in my life, therapy was the key to that happening. My arms now had to serve as my legs. Transferring into and out of my wheelchair, pushing my wheelchair or just getting a glass of water from the fridge to the table had to be learned.

So I listened and started to push myself. I did the free weights, the cable pulls and the stationary bike. I learned how to transfer my body from my wheelchair to another chair, or the car. I learned how to drive using hand controls. I had to learn how to balance sitting up. I would transfer to a mat, the therapist would hold me in place and then let go, and over I would go. I would hear, “Try again!” And again, and again, etc. I had to learn how to cook for myself, clean up my own messes in the kitchen, take a shower, go to the bathroom and the list goes on.

As the weeks went on, I also realized many other benefits from therapy. I have chronic back pain. Therapy helps keep my muscles flexible which helps some with the pain. Some people in wheelchairs, like me, also gain weight more easily. Working out and exercise helps keep the weight off. Therapy/working out is also a great way to fight off depression. And the cardiovascular activity became a huge must to prevent artery or heart problems since I was now forced to live a more sedentary life.

Fifteen years later I still work out on my own. Wendy and I belong to a gym and we work out together. We use the track, free weights, cables and even the nautilus equipment now. As I get older, working out is crucial to maintain my independence. I must admit that Wendy does spoil me rotten. She takes care of the inside of the home, prepares meals and, more often than not, cleans up messes that I make. But I do many small projects around our home, inside and out, that I would not have been able to do if I had quit trying in the beginning.

Therapy is such a critical element in recovery from an injury. Listen to what Kevin Mather has to say about therapy.

http://youtu.be/zqcBboHwUFA

So keep exercising! Keep pushing yourself! And never give up!

www.rickhuntress.com

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