The Steve Story
The world of disability came crashing into my life in 1978 at the ripe old age of 22. I had been losing sensation in my fingers and having an increasingly difficult time walking. I visited my family doctor on a Monday, and was scheduled for surgery on Thursday to have a tumor removed from the cervical [neck] area of my spinal cord. I had surgery, completed my physical rehabilitation, went through radiation therapy and was released back into the world. The world, my world, certainly looked different! It was clear that I couldn’t continue to jump from one unskilled job to another, but, I was clueless as to where to go or what to do. As I look back, I was struggling with the changes that had occurred, and, needed to occur in my life.
I still don’t know who made the referral, but, I am thankful that someone on my healthcare team made a call to the Office of Vocational Rehabilitation. A state run organization that helps people with disabilities return to work. I met with the OVR counselor and he said he could help me find more suitable employment based on my physical limitations. All I had to do was develop a “realistic vocational goal” and he would try to assist in any way he could. I am still amazed at how quickly I was able to make a decision. I was sure that I wanted to do his job; help people with disabilities become productive members of the community. I was already learning what it was like to have a disability; I just needed to get the other skills necessary. As it turned out, I needed a college degree.
So, with tuition assistance from OVR, my parents and a student loan, I earned a Bachelor of Arts degree. During that time, I applied for and received Social Security Insurance [SSI] which certainly helped to cover costs of transportation, books, etc. My parents were very supportive and helped in every way they could by providing room, board and car access. Also, the rest of my family and my friends supported me every day.
Well, there I was, a college graduate; degree in one hand and cane in the other but no job prospects helping people with disabilities. In order to get those jobs, I soon discovered you needed a Master’s Degree. Even though I didn’t have the qualifications to perform the job I wanted, I really wanted to start working; I guess I had something to prove. So, I took a job as a Child Care Specialist at a youth group home. It wasn’t exactly what I had hoped for, but, I was getting plenty of counseling experience and learning about the problems that the teenagers had to face, their family dynamics and their very long list of emotional problems.
After three years with the kids, it was time to get back on track. I went back to school and earned my Master’s Degree in Rehabilitation Counseling. I was finally armed with the degree that focused on working with people who have disabilities. Immediately after graduation, I began working with disabled students in the community college system. After a few years, I was hired to develop the vocational department in a rehabilitation hospital. It was my responsibility to address any work or educational issues of the patients. I loved my job. It is noteworthy to mention that also during this time, I got married, got a house, got a lawn mower and got a dog. Life sure seemed to be going well.
Of course, just when you think you’ve got it made, something knocks you off balance. In 1992, doctors found that I had recurring tumors on my spinal cord. Surgery was performed, but, the damage to the cord this time created much more serious deficits. Now, instead of some numbness in my right hand and leg, I had lost the function in my hands, legs and feet. Those of us in the medical field call this a ‘train wreck’. And the strangest twist was that I became a patient in the rehab hospital where I was working. Strange but positive for two big reasons. First, I had a building full of friends who were rehabilitation professionals tripping over each other to help me. Second, it thrust me into the position of having to succeed because I couldn’t let any of these folks down. I, like it or not, was the poster child for the hospital.
When you measure success in a situation like this, it’s not measured by how your body recovers or how much of your function returns. Success is measured by what you can do with what you have left. While I didn’t have very much functional return, I was quite adept at utilizing all the specialized equipment that’s available to help those of us with disabilities. With training and practice, I was eventually able to independently shower, get dressed, feed myself, walk [it wasn’t pretty or super safe, oh well], drive a car and return back to work.
That is the positive side to that story. The negative side was that I lost my health, my wife, the house, the lawn mower and the dog. The emotional damage is horrible, nauseating and infuriating [I’m keeping that list short]. Looking back on it now, I believe that God gave me the strength and support to move forward. At the time, I just focused on the task at hand. I needed to keep my job, find housing and have a life. Fortunately, mission accomplished! I got an apartment and eventually purchased a condominium, found love, got a dog, but never could use a lawn mower again.
I continued working until I was in an auto accident in 1995. I smashed my hip, they tried to repair it but the process was not successful. I had to wait three months in a brace that kept me seated at a 45 degree angle before we found that out. This was not much fun! I requested that they perform a hip replacement, but the original surgeons would not due to my spinal cord complications. We went surgeon shopping and did find a doctor who successfully performed a total left hip replacement. Of course, I was in and out of my rehab hospital after both surgeries. After that, I was using a wheeled platform walker to get around [ambulate].
I changed jobs after that. I was hired to develop a vocational program in what is termed, “the private sector”, a fancy name for a profit making company. I was assisting people injured on the job and working with the employers to facilitate the employees’ return to work. My disability and my walker were both a blessing and a curse. Either way, I did make an impression with those I was in contact with.
In 1998, love evolved into marriage. This wonderful woman who committed to being my care giver after the auto accident was willing to be my wife. She was and still is a true blessing. Anyway, after a very brief health honeymoon period, doctors discovered that I had a fast growing cancer in my abdomen. So, I had surgery, again, and then had a course of chemotherapy treatments [not something I would recommend]. We realized that trying to return back to work after all this would use up any energy I had to maintain my health and try to function independently. We decided to move from the condo and find a home that could be operated financially on one [my wife’s] income.
In 1999 we moved to the country. Our plan has been working. It’s 14 years later; I’m cancer free and functioning as independently as possible. I have had to switch from the walker to a manual wheelchair. Gravity was not being very friendly to me. I think that is part of my ‘success’, continuing to assess and adjust as needed [not as easy as it sounds]. Of course, my wife has plenty of influence with that part of it. Not only is it due to her caring side, but, her guidance, support and encouragement that keep me pushing to be self-reliant.
Although things on the health front were going well, I still had to find something to do. I needed to find a way to be productive. Productivity with income would even be better. I discovered that I had some skills in graphic design, web design and photography. I started a home based business, taking on small jobs. It didn’t matter to me whether it was retouching a photo or building a website, it was great to stay busy. While I am not able to report being hugely successful from a financial viewpoint, I am being productive with my 'projects' every day.
I have not had any other major health issues [I probably shouldn’t even mention it]. I am deteriorating at a steady pace. Old age is not kind to a body that has already been through some serious stuff. But, I do put forth the effort to do my best every day. Some days, my best is just being able to shower, brush my teeth and get a sandwich. Other days, I do all that and work, ride my modified trike and/or walk in the pool.
I have been fortunate to be blessed with a loving wife, supportive family, friends and professionals who have enabled me to maintain an optimistic outlook. I really try to focus on the moment; what do I need to do now and how can I get it done. I don’t concern myself with what I used to be able to do [some days that is very difficult]; and I don’t plan too far ahead unless necessary. I have to plan for each day; that’s plenty.
by Steven J. Smith, M.Ed.