CP Disabled Woman Seeks Grant Help To Publish Caregiver Books Online
by Lisa Rowan
(Independence OR, USA)
Lisa Rowan & hubby Jonathan Taylor
I was born in 1973 by emergency c-section. I was misdiagnosed as retarded at age 3 and fought my way out of Special Education by age 7.
I fought for an unmodified high school diploma, which I received in 1992. I met an able-bodied man and started dating in college, and received a BS in 1997.
We married in 1999, and my mother became wheelchair-mobile later that year and moved in with us to save money and for mutual support.
While holding down a full-time job, my husband served as my primary caregiver and my mother's until Mom's death in our family room by legal attended suicide in 2009.
We wrote a monthly column in a local paper for five years about family caregiving and how to stay sane with one's mother-in-law living in the middle of one's marriage.
It was well received and became the foundation of a series of e-books on family caregiving.
We are now providing support and assistance, but so far no direct care, to my husband's mother (nearly blind and deaf) and his stepfather (with advancing dementia).
My husband and I have no children of our own because I would not survive pregnancy.
But his two children have answered my biological call and gave me part-time children to raise from elementary school age.
Now adults, their children love me like a grandmother. We know of no one with a better or stronger marriage than mine with my husband.
Cerebral Palsy is the result of a bruise on the brain, usually suffered pre-partum. Mine is on the left side of my brain, leaving me ill-equipped to excel in spelling and grammar.
This caused me to be misdiagnosed as retarded at age 3. I suffered the bruise in-womb when my mother fell off a horse while 7-1/2 months pregnant.
I walked with a walker until age 10, when I developed muscle spasms strong enough to rip both femur bones from both hip sockets.
Five surgeries at Shriner's Children's Hospital in Portland (OR) left me in a wheelchair for the rest of my life.
My disability was fairly stable after that until I reached my mid-thirties.
I am 38 now, with deteriorating mobility that may be related to the genetic condition that drove my mother to end her own life.
I can no longer perform most Activities of Daily Living without lifting assistance from my husband.
I have recently developed chronic recurring severe joint pain.
I received SSI disability payments during college but they stopped after I married when my husband's youngest son moved out of our home.
Social Security lawyers have told me that I do not currently have a promising case to claim Social Security Disability Income benefits.
I also have a Certificate of Disability issued in the 1990s.
I suffer from Chronic Obstructive Pulmonary Disorder (COPD), a smoker's condition caused by damage to my lungs from infancy; and from hypoglycemia, the opposite of diabetes, which causes my blood sugar levels to deviate wildly; and from larynx spasms that cause periodic respiratory arrest with bowel and bladder spasms; and from dizzy spells of unknown origin or cause that feel like mini-strokes. These last two conditions are of recent onset.
My husband, Jon, has provided most of our income over the years, but I have about $900 per month in a retirement death benefit from my mother.
Jon is now almost 60 and recently unemployed with a series of health problems that make him unattractive as a new employee.
I received my degree 90 days after Affirmative Action ended, so I was never able to land employment as a juvenile detention counselor or probation officer.
Jon has an untreated hernia from lifting me but I can't climb into my wheelchair or onto the toilet without his help. My medications are an affordability hardship and I am living without therapeutic bathing facilities, which we cannot afford.
While my mother lived with us, she gave us $800 per month to help with food and other bills related to her care.
I lost SSI benefits because my husband's job paid more than $800 per month, which left me "too affluent" to receive SSI.
When those benefits ended, I was not told that I qualified for SSDI benefits, although I did.
Upon graduation from college 90 days after Affirmative Action ended, I applied for over 50 positions with various Oregon state and county governments, but was not hired by any of them.
I worked for 18 months for minimum wage in 2001 and 2002 as a day care provider, and substitute classroom aide for Central School District in Independence.
I spent seven years volunteering for the Oregon Youth Authority as a mentor to incarcerated violent female juvenile felons. That was supposed to evolve into an employment opportunity, but it never did.
Our business has produced four e-books about family caregiving issues. There are 60+ million family caregivers who need the information in our e-books.
We have no marketing budget and no effective way to reach the majority of these caregivers.
They are overworked and financially struggling, so they lack funds to buy the books or time to attend alternative presentation methods like seminars or classes.
We need funding for marketing or a means to present our information to them through Social Security or other disability-related organizations that touch the majority of this population.
Tiara Enterprises has produced a series of e-books for family caregivers. All production costs have already been absorbed.
The Internet can distribute these books ($3.99 retail) with 9% of payments taken by PayPal and 25% ($1 per book) charged by a book retailer (such as www.borders.com) and a distributor (www.smashwords.com).
We have other e-books in the hopper that will be distributed to the same audience. Our distributor, www.smashwords.com, provides some marketing support and ideas that might work, and we are trying some of them.