Wednesday, September 14, 2016

Don't limit me

The word "limitation" means so much more to a person with a disability than to someone without a disability. For someone with cerebral palsy, the word limitation begins to be heard and often repeated as early as infancy. I remember hearing limitations from doctors, teachers, camp counselors, family and friends my whole life. However, I never set limitations on myself and didn't accept what others felt I could or couldn't do.

When you have a disability, such as cerebral palsy, all the outside world seems to focus on is your limitations.  The wheelchair is obvious, the speech impediments, the different way someone moves, and the need for assistance become the focus.  But what if someone looked deeper into someone's heart? They would find much more than limitations.

In my own mind and heart, I see no limitations for myself.  I naturally know what my body is capable of and just move on with my life.  Limitations hold you back, but I want to soar. And, so I did as well as the thousands of people who live with cerebral palsy. We aren't victims of cerebral palsy.  We are people who figure out ways to do whatever we set our mind to do. What you might see as limitations, we just see as daily life.  When someone tries to limit me, I try harder to find a way. 

Something that most people don't realize that people with cerebral palsy often forget that we have it.  No one, that I know of, sits around and feels badly about themselves all day. And if they do, believe me cerebral palsy is the least of their problems.  I only think about my disability when I'm trying something new or answering questions about it. Only once in awhile, do I feel bad about my disability or mad that I can't do something that it is just not possible.

What I have come to realize is that cerebral palsy isn't as limiting to people with disabilities as society can be. Society is the one dictating limits to us more than cerebral palsy.  For instance, steps to a public building such as a really cool new coffee house in town that we will never be able to check out. Employers judging someone based on what they see and think that they know instead of allowing someone to prove themselves. Laws that prevent people who have disabilities to get married because if they do, then they can lose much needed medical benefits that are needed to survive.

One of the biggest limitation are places such as Hollywood portraying an unrealistic view of someone with a disability. A recent movie out during the summer showed a young man who lived a better life than most of us choosing to commit suicide than to live with a disability.  Assisted suicide being pushed or even expected to people with any disability as a good alternative instead of conquering life itself. 

If I let the limitations that others placed on me settle into my soul, I wouldn't be where I am today. So many limits even if I could graduate high school let alone college. The ability to teach, dance, marry, have children, raise children, work, play sports and to be a leader are all limits I was given since I was diagnosed with cerebral palsy.  All the limits that I refused to accept and did what I wanted regardless of what others thought.

I hope that today someone would not place limits on anyone but especially those with cerebral palsy and other disabilities.  I hope today we can start to break down barriers that actually make life more difficult for someone with a disability instead of easier.  Instead of saying, "you can't do that," how about we say,  "how can I help you do that?" Live beyond limits and reach your goals set for yourself.

The beginning of my breast cancer diagnosis

The holiday season is meant for family, decorating, buying gifts and being happy. However, this year felt completely different since getting the news that I needed a biopsy on my left breast. We had Thanksgiving dinner at our house, and it was nice to feel the support from my family.

I decided not to tell many people simply because I didn't want everyone to worry. This meant especially my nine year old daughter didn't need any worries. We are close, and she knows that sometimes people who have cancer don't always survive.  My philosophy was to tell her when I had something to report, and not just speculation.

My mother is a nurse, cancer specialist and clinical researcher. I'm fortunate to know someone so knowledgeable. We talked about my potential choices. She said that if she faced breast cancer that she would have a mastectomy. The idea of having a mastectomy seemed so foreign and scary that I couldn't wrap my mind around it.  My family and I  sat in disbelief that this was happening.

After the Thanksgiving weekend passed and life resumed to normal, I sat one afternoon staring at the business card of an oncologist given to me after my ultrasound.  I  didn't want to call to make an appointment. It was just one more step making everything more real. My husband came home from nursing school and sat with me as I called.

A lump formed in my throat as I heard the receptionist say oncologist office. I explained everything to her, and she nicely set up an appointment. I believe it was the next week.   All I  could do was live as always while holding the weight of my future on my mind.

In movies that focus on cancer patients, time goes by fast.  It seems like appointments and tests are immediate. And either the person is cured or, unfortunately, doesn't survive.  Well, in real life, time goes slowly when searching for answers.  Life doesn't stop for you to deal with your emotions or obligations.

In my case, I had a third grader and a two year old to  raise. My husband was trying to support me as I tried to support him with nursing school. I had a house to take care of, pets, bills to pay and articles to write.  Life didn't stop for my diagnosis or anyone's for that matter.

My personal care attendant took me to my first appointment with the oncologist. My dad babysat my son and my husband sat anxiously in class. My heart sank as I saw the office building was clearly labeled Cancer Center. Just another reminder of what I might be up against and making my future a bit more hazy.

The office seemed dark and warm.  I looked around at the other people and thinking how unfair it is that anyone had to go through cancer during Christmas! My iPhone kept buzzing with text messages from my sister, mother, dad, husband and best friend. Texts of love, encouragement and seeking information.  Then, a nice lady wearing pastel scrubs opened the door and called my name.

My attendant and I went in a standard room with blue walls. The nurse seemed very nice and talked to me (which isn't always the case when you have cerebral palsy.) She made a nice comment on how quick my attendant helped me into a yellow paper robe that covered my  chest.  She said my doctor would be with me soon.  She also handed me a big white binder with information on breast cancer. She said that I could keep all of my information and future appointments papers in it. I sighed looking at the binder.

The doctor came in, and he introduced himself.  He examined me, which I knew was necessary, but still invasive.  He reviewed my X rays and said that he didn't see any signs of cancer, but wanted me to get another mammogram on the left side to make sure. What a wonderful relief I felt as I texted everyone when I went outside after I scheduled another mammogram.

But, the feeling of relief was shortly lived as feelings of doubts crept in when new tests came back. The pink journey continued.

How society views people who have cerebral palsy

Have you ever had a day when you forget that you have cerebral palsy? You simply wake up, do your normal routine and don't even think ab...