“I am one. Love me fully or leave me completely.” — DAMBREAKER
October is Spina Bifida Awareness Month. Although some of you may not know that because of all of the time and effort that is spent on focusing on the fact that it is also breast cancer awareness month.
I don’t know who made the decision to have SB awareness alongside breast cancer awareness but it is what it is.
I also know that there are a lot of you who are reading this, who could be considered as “new” around here and haven’t really had the time or opportunity to read about those special posts that I have spread throughout this blog about MY disability in general. And I realize that I have only given a hint or two as to what it is like having to go on with life with a disability.
And as the world seemingly united under one cause for ALS during the time of the “Ice Bucket Challenge”… I too began to think really hard about what I would want to do when October came for Spina Bifida.
But my luck ran out as I did not think of anything that would have been just as unique or fitting for a cause that would have raised enough awareness for Spina Bifida as the Ice Bucket Challenge did for ALS.
My brain was really pushed towards the limitations of coming up with a different challenge for Spina Bifida. But in the end, I could not come up with anything. I mean, I did and I still do have a few ideas but would people honestly want to participate in such a manner with that kind of challenge enough to either spread awareness or perhaps donate towards the cause?
I felt that it was doubtful.
Then when the first of October came around, I saw that the Spina Bifida Association of America had come up with a few new hashtags of their own. One of them being: #notanothercharitychallenge .
That told me that the SBAA was not looking for a challenge as equal as the Ice Bucket Challenge for ALS. What was I to do?
Well, the answer was “Write.”
- I am one out of 166,000 people living in the United States of America with the most severe form of Spina Bifida which is a BIRTH DEFECT of the spine.
- I am a paraplegic. I have no sensation from both knees to my feet. I can feel absolutely nothing.
- I am confined to a wheelchair in matters which deal with mobility.
- I am a member of the human race with the same exact feelings and emotions as the next person in line or beside me.
- I am NOT just some one or some thing. In fact I am some body.
- I am NOT a side show freak, a mutant, nor am I totally helpless and defenseless.
- I am NOT put on this Earth for you to stare at and make assumptions. My friends may consider me to be entertaining but I am not solely for your amusement. And your assumptions are going to be wrong 99.9/100 times about me. Do NOT count me out … until I am out.
- I am NOT to be tossed aside like yesterday’s trash just because my legs do not work exactly like yours.
I could go on the rest of the day.
Even within the last fifty years, there has been some tremendous improvements in the field of study over Spina Bifida. Life with Spina Bifida seems to be increasing both in duration and in quality because of these improvements. And who knows… there just might be a cure ahead. And if there is, it will be too late for me. But it will not be too late for future generations.
But we cannot do anything about it without first having the awareness. And as much as a struggle that it is when going against breast cancer awareness, people with Spina Bifida, families with children with Spina Bifida, and friends of people with Spina Bifida march on in hopes of opening the eyes of the rest of the world to this issue.
Are you willing to have your eyes opened? Are you willing to have that awareness? If the answers are YES .. you know where to find me.
If you have ANY questions about my life, make sure to look at both pages of “About” and “What Is Spina Bifida?” … consult there first. There is a list of “famous people” who were born with Spina Bifida. You may be surprised who is on that list.
Since it is awareness month and you do have a question about my life or about Spina Bifida in general… then during the month of October I will answer any and all questions you may have. Please write them in the comment section below. Thank you.