Oceanside, CA, United States
I’m not going to lie.
My first instinct is to say my life with spina Bifida has been a nightmare but I also realize I've had bad luck and flukes. This isn't normal so I hope you all don't think it is.
My understanding is spina bifida is a stable disease. You end up in a wheelchair and have bowel and bladder issues. That's it.
For many people, this is no big deal, especially if it happens young and it's all you know. This was not my case and probably why it has been such a devastating blow to me.
I am old by medical standards. I'm 29. When I was born up until about early teens, I walked with just braces. I was never told this is unusual, so I went about my life like spina bifida is no big deal. When I was about 13, I went through a growth spurt that caused a hydromyelia and tethered cord. I deteriorated to the point I had to start using a walker.
This continued until the same thing happened again at age 20 and I became wheelchair bound. This was devastating to me because I had never been told spina bifida is actually one of the most devastating neural tube defects. When I was 21, I was in a car accident and dislocated my shunt. Even after it was replaced, the headaches never ceased and doctors told me headaches were normal for people with spina bifida.
Last year, at age 28, I went to the hospital for a myelogram, which is considered normal and safe. I came out with leg and abdomen jerks. We've been to a dozen doctors who all say 'spasticity is normal for patients with spina bifida'. Through my own research, I discovered what I have is not spasticity, but medically induced myolxonic jerks.
The Standard of Living for people with spina bifida is embarrassingly low. EVERY medical complication is considered normal and we're expected to be o.k. with that. This is not o.k. with me. I wish for the Standard of Living for people with chronic illnesses to be raised. I'm tired of hearing that I should just be happy to be alive. No, I'm not happy to be alive, trapped in a non-working body. It should never be o.k. to be expected to live like this.
Read more What life is like on Faces of Spina Bifida online magazine.