In August of 2012, I became a caregiver for my husband.
Seven months after we got married, my husband was diagnosed with Multiple Sclerosis, a chronic, typically progressive disease involving damage to the nerve cells in the brain and spinal cord. We dated for two years before we were married and over time, I noticed his abilities diminish.
He would lose his balance when standing and walking, moving became harder, and he lost confidence in himself. His speech grew progressively worse and fatigue became chronic. Without health care insurance he went undiagnosed and treated.
Prior to our marriage, he was let go from his fulltime job as a business analyst for not performing at the expected level. He needed to learn new programs all of the time. I believe he was already showing signs of MS, which made learning new skills and working long hours difficult.
He tried to find another job, but had no luck. Over time, his health concerns had become more apparent and he was afraid to deal with them. He lost confidence in himself and took solace in the four walls of home.
After he was diagnosed with MS, I would take him to appointments and although he was seeing doctors and physical therapists, they were never on the same page or working toward a common goal. I tried to be there for him whenever he needed me. I didn’t push him to do things he didn’t feel comfortable doing. I would get him whatever he needed. I did this to help him stay in a positive frame of mind.
When things were hard for him, he would get frustrated and land in a very negative place. I tried to prevent him from going into that place. I worked hard because I thought I was helping him. Maybe I wasn’t.
When we got married we did things that couples do. Go out on dates and attended events. I thought we would continue to do these things, but his diagnosis changed all of that. He changed.
Two years from the diagnosis, I found myself avoiding home, staying late at work to get things done and delaying the inevitable. We were still newlyweds and it wasn’t supposed to be like that. I resented my husband and his MS at times.
Questions would creep into my mind: Why did I have to give up my life to be there for him all the time? When does this marriage even out? After three years of knowing he had MS, why can’t he just deal with the things that he can and can’t do and contribute to the relationship?
At times I felt like a horrible wife and that I needed to be more compassionate. But there is another disability in this marriage.
Confronting my own disability
I was born in 1975 with Spina Bifida, a congenital defect of the spine in which part of the spinal cord is exposed through a gap in the backbone, often causing paralysis of the lower limbs and sometimes mental handicap.
But I was one of the lucky ones. After two surgeries to repair the defect, I started walking at age 2. I wore braces and visited a children’s hospital regularly for observation and therapy. I had a team of physicians working together on my progress from the time I was 6 months old.
I had no feeling in my feet, but I was a functioning member of society. I had all of my mental faculties. I never saw myself as having a disability and I wasn’t treated that way by my family.
I had annoying reminders of my condition. My feet turned outward when walking and I would go through shoes like crazy. I would have accidents, like I was still a baby, because I couldn’t feel the sensation of needing to urinate. Eventually, I trained myself to go to the bathroom at certain times.
Growing up, I didn’t talk about having Spina Bifida because in my mind I was normal and that’s all I wanted to be. I didn’t want Spina Bifida to define me. I did things in spite of it.
I competitively roller skated from the ages of 6 to 10, was the first girl on an all-boys little league team, handled shot-put on my middle school track team, was on the middle school golf team, and in high school, marched all four years in the marching band.
Even though I did all of these things and pushed myself to rise above my birth defect, it was always there, reminding me of it.
When I was 15 years old, spent three weeks and three days in the infectious disease unit of a hospital because I had a blister on my right foot that got infected all the way to the bone. This happened because I couldn’t feel it. I spent seven days in the hospital the following year because one day I couldn’t stand up. At 16, I had a 4-inch long, 2-inch wide, and 2-inch deep cyst on my lower spine that I was unaware of until it prevented me from standing upright.
I also didn’t have health insurance to cover these expenses until I got my first full-time job at age 26. My father had in the back of his mind that I was going to need his help or my siblings help to live and pay my future medical bills.
My mother always told me that I could do and be anything. She was my cheering section, my advocate and my best friend. If I wanted to do something, she would be ready to fight for it. When my mother passed away, my father began to be all of those things, but not in the same way. He was constantly worried I wouldn’t be allowed to be whatever I wanted to be. I think he was trying to temper his expectations of my future.
I have exceeded his expectations. He is proud that I met Vice President Al Gore in 1996 and was chosen to be a volunteer during the rehearsals for the VP debate. He was surprised when I spontaneously flew out to California, on my own, to be an extra in an episode of “The X-Files.” I think my father is most proud because I can take care of myself, that I think for myself and I don’t let anything stop me.
Working through disability together
Even though I have lived with a disability my entire life, and the adversity that comes with it, I find it hard to understand the place my husband is in. I want him to thrive despite his limitations, because I have been doing so for 40 years. I want him to push himself because I have pushed myself.
Over the last three years, I have helped my husband obtain disability and contribute to our life. He has canes, two walkers and a power chair to make walking around and leaving the house easier. The power chair he uses allows him to handle small tasks around the house, including taking the garbage out. The power chair, along with a handicap van, gives him the ability to go anywhere he wants to go and the ability to do things that I would like us to do, too.
The Americans with Disabilities Act passed in 1990, 25 years ago this Sunday, which requires public spaces to be handicap accessible. My life with my husband is easier because of ramps, accessible seating in movie theaters, power chairs and handicap vans.
Can more be done? Always, but for right now, I am content with what we have.
I’ve learned the easier way is not always the best way. By stepping in to do things for my husband, it enabled him to keep from trying. Now, my husband tells me not to do things because he wants to try them. I appreciate his effort more than ever. By talking about what bothers us and when we are happy, we are both learning how to support one another.
My husband is still working to come to terms with his disease. Based on my experience, he knows there will come a time when he will accept certain things. It will take a lot more work on his part to get there, but I will be by his side to help him through it.
I’m hopeful that with time, my husband will want to live his life the way it was meant to be lived. I’m learning to be his cheering section and support him the way my parents supported me. We both have a lot of work to do, but I am glad that we are growing and learning together.