21 Year Old Dermatomyositis Disabled Woman Seeking Education Grant
by Ruth Robb
(Mancelona, Michigan, USA)
My name is Ruth Robb. I am a disabled 21-year-old single female looking for a government grant for a college education.
I live with my uncle Larry in Mancelona, Michigan, USA. He took me in at 17 because my mother was having trouble feeding and caring for all six of us.
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I owe my mom my life, literally, she breathed for me when I was dying at age 12. All I want to do is make her proud.
But I need help, a lot of it, to get where I want to be. I can't do much with my physical body anymore, but I'm not afraid to say I have a mind like a super computer and I crave knowledge.
My dreams are in all things science and I long to pursue studies in the marine sciences. I just need to be given the chance. I want to go to college for my bachelors.
The last time I tanned it was 2001, I was 11 years old and had gone on vacation with my cousin to Minnesota to live with our aunt. The weather was hot, too hot for me, but I stayed out in the weather anyway, shook it off.
I burned badly, much worse than normal. The tan was hidden under layers of pain and regret. For me at the time it was just an inconvenience.
When I came back to Michigan though, I was pale/white, but I took no notice. It was actually later that year, after a bout with pneumonia that I really understood that something was different.
It was a month into my fifth year of school, and it was early morning. I was sleeping on the couch of my family's new permanent home on Eddy School Road in Bellaire, Michigan.
I rolled off the couch to the sound of the all-too-familiar alarm and came to a stop. Smiling and yawning I tried to push myself up, and I couldn’t. I called for my mom and she came and examined me.
I got to skip school that day. I was just happy to be out, nothing else came to my young mind that something else was going on.
After struggling, with a seemingly blind eye to my progressing condition, I went to school the next morning.
Bending over was impossible without tipping over. Walking up the ramp to my class was almost impossible.
Any exertion on the playground led to wheezing and gasping, which later transformed into swollen muscles and red - hot to the touch - skin.
Being an athlete at the time, it was very confusing. I played soccer, outfield, I ran track, participated in the high jump/hurdles and many other on field practices.
Finding myself on the sidelines breathless and weak watching my classmates run by was foreign and sad.
About a week from having rolled off the couch, I awoke one morning to discover a jabbing and most unbearable pain in my right shoulder.
I was used to a similar pain in my legs when I stretched or tore a muscle, but nothing topped this.
I tried to ignore it, but then my favorite size 12 jeans were all of a sudden 3 sizes too small around my waste.
My mom instantly knew something had changed and took me to the ER.
It took eight days to get a diagnosis and once the doctors had that, I was set up for a muscle biopsy and electromyogram.
Both were more painful than I care to revisit.
I also had X-rays, MRIs, EEGs and EKGs done. Then I started weekly 500 ml steroid injections that lasted for months puffing me up like a balloon.
I was full assist. I had lost nearly half my muscle tissue. I couldn't walk, hold my head up, move my legs or arms beyond wiggling and thrashing.
I could not feed and care for myself either.
This went on for 7 longs years before I started the climb back up. Schooling was impossible though I tried my very and most sincere best to finish my grades.
I got through 10th but couldn't pass due to that fact that I wasn't at school enough. I dropped out to focus on my health.
I no longer use a permanent wheel chair but accept one when shopping or on long trips. I also have permanent damage to my body sustained from constant drug use and the diseases progression.
Now some 3 years later from tacking that first step out of a wheelchair, I've undergone more medical tests, doctoral visits, and drug infusions than most people have in their lifetime.
As an adult today, I currently struggle with Dermatomyositis or JDM, as well as Temporal Lobe Epilepsy and Osteoporosis and I am still fully medicated.
My life experiences so far range from being medevacked by helicopter to Michigan University Hospital, multiple surgeries and near death experiences.
I hope to build on all I've been through for the better… in life, love and leadership.
I have completed my GED with a GPA of 3.4 as of May 2011. I hope to be attending a college by the end of this year.
My family has never been anywhere close to financial freedom. I lot of this rides on the fact that my mom gave up her job to care for me at home.
Her reasoning? She told me and I quote, "If my daughter is going to die, she is going to die here with her family."
The doctors had informed her I might not have a lot of time, but she refused to accept this.
So she quit her job, brought me back from the hospital and nursed me back from the grave while keeping a family of 7 on her own.
No money could be put aside for me, or for my brothers or sister. So we lived on charity and a small government check for many, many years.
As of today, this little apartment is all I can do right now. I get a small SSI disability check but it barely covers the cost of living, let alone going to college.
I still have trouble walking. I fell two weeks ago and still brandish a sprained left foot and right knee.
Working is difficult without a vehicle. I have no money put aside and no other income.
I use wheelchairs at store that have them. I take many different medications, many which affect mental capacity, like methotrexate.
Going up stairs in impossible if there are more than three steps and long distance walking is out of the question.
Symptoms I suffer today include: muscle weakness, contraction of the arms and legs, shortness of breath, difficulty swallowing, muscle tenderness or pain, feeling tired, weight fluctuations, skin rash, back pain and visual/somatic/tactile hallucinations.
I can drive and I want to. I just can't afford a car. Busses are difficult to manage due to the steps.
My goals right now concern schooling, but I could not work at the same time. The stress would be so great I would eventually have to drop one or the other.
I do receive a monthly check from SSI, but it is all used for rent, gas, electric, gas (my uncle drives me around), care supplies and some food, though much of my food comes from charity.
Now that I am healthier I do hope to once again attend church on Sundays.
The last 3 years since moving out of my mom's house has been invested in health and physical progression through rigorous therapy and training.
My hope is to get help for college and housing through grants and/or scholarships. I would love to be sponsored by a private group or organization.
I have already applied to Northwestern Michigan College in Traverse City, Michigan and I want to be attending in the fall.
I am trying my best to reach out to anyone who is willing or knows someone who can help attain this dream.
Also if there is anyone out there, private parties, groups or organizations that can help me get a car for commutes to college, I would be overjoyed.
Thank you for reading and considering my situation.