30 year Old Woman Seeks Government Grant Money For Multiple Disabilities
by Sonya Robertson
(Henrico, VA USA)
My name is Sonya. I am now 30, a year that many including myself felt strongly I would never see and not sure I will live past.
I was born March 23, 1980 6 weeks early. I am the younger of 1 biological older sister, as well as 2 other older sisters, 1 older brother as well as a younger brother.
What makes me stand out first and foremost is the fact that both Famika and I are albino.
It is said that should there be multiple albinos in a family it's every 10 generations. We are only 14 months apart.
Till this day I have yet to meet or hear of another family where albino siblings are only a year apart.
I grew up a loner. I learned at a very early age that I was not to be well received by others including my own immediate family.
I was shunned unmercifully and as a result I have an excruciatingly hard time building relationships with others.
I've managed to skate by never claiming the spotlight only speaking up for myself when pushed beyond my tolerance as a means to maintain some substance of myself.
In order to continue functioning among the brute crass callousness of the life that plagued my day to day I resorted to cutting myself then burning.
It was the way I fought the battle between God, the Devil, and myself. I would also write lashing out at those who taunted me for having the nerve to walk along side them insulting their every being.
I've been institutionalized and medicated more than once beginning in my early teens; but it hasn't been till just recently I've been able to successfully fight the urges to cut or burn due my new medication and therapist.
As if that wasn't enough, during that time I was also struggling with my sexuality. I mean truth be told I knew by the time I entered elementary I was attracted to women and it only intensified as I got older.
My mother often voiced her dismay for my non-interests of feminine wear as well as my lack of interest in boys.
I'll never forget the trip my sister, my mom, cousin, and I took to Atlanta and New Orleans when I was 17.
It was the weekend of my mother's birthday; I decided to buy myself an outfit along with a gift since I had no job while going to school.
I decided to show her what I bought for myself and she dismissed me as if I weren't there.
Even after we met up with old friends and decided to head to the fish market she was enraged with my selection of clothes.
In the middle of the parking lot as people are coming and going she screams at the top of her lungs "ARE YOU GAY? CAUSE IF YOUR GAY, I'LL LEAVE YOU ALONE."
I did like so many others and conformed to leading the facade of a heterosexual.
Shockingly, I was accepted into Howard University majoring in Architecture.
I wanted to enter the military instead but as always, mother has to have the first, last, only say.
Though I was able to branch out and acquire some friends even become the leader if you will, my goodtime was quickly overshadowed by unknown reoccurring symptoms that would have me crippled in pain and bedridden days at a time.
Unfortunately, due to the rapid depletion of my health I was unable to continue after my freshman year.
I attempted attending community college, got a job rooming with my sister, and I even managed to receive my EMT-B license.
Wouldn't you know it even with all the madness going on with my health I must have been a great disappointment because now my mom felt I should try the military.
What a shock I was declined. However, I was forced to cease all and move back with my parents because of my severely poor physical condition.
Finally, after several months of doctors, tests all resorting to no answer at age 20, I was diagnosed with having Mixed Connective Tissue Disorder.
The extend breakdown of this is: Systemic Lupus, Limited Diffuse Scleroderma, and Fibromyalgia.
Having an answer was bittersweet. Not only was my diagnoses a rare combination, for me to be diagnosed at 20 is even more rare.
Most diagnosed with Systemic Lupus live pretty normal life spans. People with Limited Scleroderma alone are given a 5-7 year life span.
Those of us who are diagnosed during young adult years are given even less and my body was definitely revealing indications that I would soon expire.
I am now 30 years old. Though I have been fortunate to move out on my own I do not work and my only income is my benefits.
I endure constant pain, suffer from insomnia, migraines, acid reflux, IBS, low potassium, active lung disease, so and so on.
I am on at least 14 meds along with 3 liters of oxygen daily. I have a constant rotation of doctor appointments with about 14 different physicians, a couple out of state.
I have undergone several surgeries with more to come. This is one of the main reasons I am reaching out to you for help.
For over 5 years I have been suffering from severe pain in my jaw and gums due to the decaying of my teeth, a direct cause of having Scleroderma.
I desperately need to have the rest of my teeth surgically removed and replaced with dentures before my jaws permanently lock, but every door that opened has closed.
So many Orthodontists have rejected me that I've resorted to pulling out my own teeth to ease the pain.
I thought my prayers were finally answered last year when I began seeing my Rheumatologist at John Hopkins.
He referred me to an oral surgeon who treated patients with Scleroderma. Even though he was fully aware of my lung disease, after all the traveling and last minute tests, 1 day prior to my scheduled surgery he called and canceled.
He now claimed I needed to have a pain management doctor and a psychologist for after the procedure. I did comply but due to the manner in which I was told I didn't feel comfortable returning.
I finally managed to find an oral surgeon at Duke University; however the cost even after insurance is greater than $6,000.
That's just a guesstimate. Whatever the total, half is to be paid prior to surgery.
I receive $693 a month and at this moment I only have $2 in my pocket.
I had no other option but to seek help through payday loans; it was the worse decision I could've ever made.
Bills are behind, I owe my OBGYN payments for a debt he's graciously kept out of collections.
I'm just completely drained with overwhelming frustration. I know my family will help a bit with some of my monthly expenses but not many.
Seeing as how I am forced to rely on them for transportation due to the fact I am legally blind their not charging me gas is already enough.
I have found a dentist who will make my dentures but because of the prolonged gap in time I don't know if she will still be available.
I am on my last leg. I am battling a respiratory infection praying it hasn't turned into pneumonia.
I have to have laser surgery some time this month as well as make the trip to Maryland for my follow up appointment with my specialist.
I still have co-pays due for meds and appointments.
I'm at the point of suicide and I don't know how much more I can take.
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