Fear of the Unknown

Standard

6:35 pm I walked out of work and realized I couldn’t read the Kiehl’s store sign across the street. It was odd because I have 20/20 vision; one of the few things my autoimmune condition doesn’t usually effect. 

I shook my head, wiped my eyes and put pressure on the veins inside my eye sockets in an effort to clear my vision before I got to the number one train on Manhattan’s Upper West Side.   

For a second, I thought that I might get dizzy and fall onto the tracks. So I took a few steps back from the edge and inhaled deeply a few times. I waited for the train then took it to Penn Station. 

I boarded my NJ Transit train and slumped into a seat. By then, I was weak, shaky and my eyesight was even cloudier. 

I could barely see the gap between the train and the platform when I got off at Newark Penn Station. Every step down the stairs was extremely cautious; every block home looked like a tunnel. When I finally got home, I collapsed on my bed. 

At 5 am, a stabbing pain in the left side of my head woke me from my sleep. I I took pain meds but nothing helped.  So, I tossed and turned in pain until 9 am.

By then, I was up and out, waiting to hear of I was having my third stroke. Sitting there alone, I wondered how I’d get home or care for myself if my condition worsened. 

Thankfully, I didn’t have another TIA. Central nervous system issues caused the muscle contractions and sharp pains in my head, neck and shoulders that were unbearable when combined with my usual knee and lower back pain. 

Now, I’m checking my blood pressure hourly to look for sudden spikes. I’m also taking Fioricet and Tramadol every four hours. But, I have no medicine for the concern that fills my heart because my body is so unpredictable. 

Why Doesn’t A Jury Of My Peers Care About My Fear For My Life?

Standard
A jury has decided Officer Betty Shelby was justified in shooting Terence Crutcher, an unarmed man, in Tulsa, Oklahoma. But, what I don’t understand is how they came to that verdict when it’s unclear why she perceived a threat when the other more experience officers around her did not? 
After all, she is trained to asses situations. She claims she opened fire on a man with hands in the air, his back turned and who was walking away and not advancing towards her because she thought he had a gun. Why was she the only one at the scene who thought that? Why can’t we admit that perhaps the sight of a large black man, far bigger than herself, who was not obedient was enough of a threat for her to kill?  
When I was young, I was taught to respect police officers, to answer their questions respectful and follow their instructions. If I did, I’d be just fine. I believed that because my uncle John was a career officer and my father had attended the police academy. I figured neither of them would give me bad advice about safety. Yet, a string of events that have made headlines have made me question this advice.  
The acquittal of Officer Shelby shakes the foundation of everything I thought I knew about police survival. Now, I can only hope that by doing four things, I will live to see another day following a police encounter.  They are complying with and officer’s request; Hands up and open so it’s clear I have no weapon; make sure someone is recording the incident, if possible; and don’t turn my back or walk away unless instructed to do so. The fifth thing is to pray.  
If I am unsuccessful, I’m not certain my family will get justice. Crutcher and others like him aren’t able to get up on witness stand to talk about his fears or thoughts before their death. Meantime, Officer Shelby got to tell the jury that she shot him because she feared for her life. She now she gets to go home to hug her family and friends while his family does not.  Where’s the justice in that? 
Still, I’m not angry. I just wonder why a jury of my peers doesn’t consider the fear citizens have for their lives during a police stop? What will it take for them to do so? I can only hope that more people don’t take matters into their own hands because they don’t believe their loved ones will get justice in a courtroom? Perhaps, someone will finally find a way to try civilians and police officers how survive when they come in contact so no one reacts out of fear?

A Love Letter To My M.F.F. (Mother and Friend Forever)

Standard

I’m her first born, her baby girl, her only daughter and I am the sickly one. My twenties and thirties were a disaster. The autoimmune condition that frequently tortures me nearly claimed my life on several occasions. Each time, my mother rushed to my side and nursed me back to health. I felt guilty. I thought I was a burden. But to her, she was simply being a mother to me; a job that would never end. 

Thankfully, over the last year my medical issues have lessened, giving mother and I the ability to just enjoy together. Recently, we chatted as we sat across from each other while eating a lunch after a morning volunteering together. We talked candidly about our relationship woes, difficulty with the children and our medical problems. No topic was off limits. No judgment was passed. We simply exchanged advice, observations and offered support like two girlfriends would do.  

As we walked back towards my car, the lyrics to a song popped into my head:  

“I’ll always love my mama

She’s my favorite girl

You only get one, you only get one, yeah

I’ll always love my mama

She brought me in this world”

I realized the woman beside me taught me how to be a caregiver, to give back, to be a good partner and to pray when all else fails.  She wasn’t just my mother, she was and is my friend. She’s my M. F. F. (Mother and friend forever)

#mothersday #family #love #autoimmunedisease #caregiver #friends 

Here’s Why I Don’t Expect Flowers for Mother’s Day

Standard

From the moment I looked into his little eyes I loved him. I cherished his curiosity, innocence, playfulness and pure joy. The truth is I love my “stepson” in ways that are deeper than the affection I have for his father.

For nearly seven years, I’ve cared for his cuts and scrapes, done homework, changed sheets, done laundry, made breakfast, listened to stories and watched him grow. I’ve planned trips so I could show him the world and planned adventures so he could test his limits. I’ve been at his plays, concerts and religious rites of passage so he knows someone is always there for him. I’ve been proud of his accomplishments and tried to guide him through his failures and problems.

Of course, it’s not always easy being in the background or being constantly reminded that I’m not his biological mother. Yet, I try to remember that I care for him because when I met his father I decided I had to love him as if he were my own if my relationship was going to grow and flourish. Also, I always wanted to be a mother so being a stepparent, to me, was the next best thing. Even though I only get to do the job part-time, I cherish my time with this child who is now a young man.

I’m grateful to his mother for bringing this sensitive, generous human being into the world. I’m humbled she, and his father, let me have a hand in shaping him. I don’t expect cards, flowers or praise on Mother’s Day. I’ve already gotten a gift that fills my heart each and every day.

Happy Mother’s Day!

 

Will Relying On Faith Be The Only Way The Sick Survive Under the AHCA?

Standard

 

I bowed my head and prayed yesterday as I watched the votes roll in for the American Health Care Act. I wondered, how can elected leaders vote on a plan without knowing its impact, it’s total cost, or its benefits? How could they, in good conscience, believe that agreeing to something blindly is the right way to protect any American?

By the time my prayer was over, the tally was in and the measure passed in the House. I watched as President Trump heralded Republicans for a bill that will allow states to get a waiver to let insurers  off the hook for covering people with pre-existing conditions.  I wondered, how the same man who denounced discrimination just hours before could applaud a bill that is biased towards the chronically ill?

Before the vote, President Trump signed the Religious Freedom Bill. He said his administration wouldn’t allow people of faith to be targeted, bullied, silenced or discriminated against again. Was his outrage over oppression genuine? Or, is it reserved for people who shared the same income, values or political views?

Of course, the executive order the President signed relaxes the tax rules for religious organizations and the rules regarding punishing them for participating in political campaigns. Conservatives hope this will mean more money in their pockets and speaking opportunities. Meantime, the AHCA  they support will take more money from the working poor, elderly and chronically ill Americans. Aren’t the people affected by the ACHA the same ones religious leaders should be striving to protect and help?

The ACHA will also defund Planned Parenthood, removing medical care options. Conservatives see this as a victory for family values and the right to life movement. But, who will care for sick children born to parents without healthcare? What kind of quality of life will they have without proper medical attention?

I can only assume the President has decided the sick will survive on faith if the AHCA passes in the Senate. Or, perhaps his administration is sending message that discrimination against the sick is okay if it’s good for his political clout.

#ACA #obamcare #healthcare #ACHA #trump #PresidentTrump #sick #discrimination #ChronicIllness #Autoimmunedisease #PlannedParenthood #ReligiousFreedom #ChronicPain #igg4

Why is Discrimination Against the Sick Allowed in the US?

Standard

Why is my life not worth more than a vote to this administration? That’s the question I asked myself when I woke up to the news that an amendment has been added to the bill to repeal and replace the Affordable Care Act. The change doesn’t ensure people, like me, with pre-existing conditions will be able to keep or get health coverage.

The Amendment crafted by a Republican Congressman from my home state of New Jersey allows states to seek individual waivers. One could end continuous coverage and give insurance companies a year to write policies that consider a person’s medical status. Does anyone really think this won’t raise the cost of plans?

The amendment also doesn’t address what sick people are supposed to do while they wait for coverage. What happens to their bodies during that time?

American medical experts says sick people will get second class care if any at all. Why is it acceptable for chronically ill people to be forced to become second class citizens in their own country?

Earlier this week, more than 200 members of congress came together to reintroduce the Equality Act. It’s designed to protect LGBTQ rights; to stop discrimination against members of that community.  Where’s the bill for the chronically ill?

When the Equality Act was proposed again, I heard passionate speeches about attacks by the Trump administration on the rights and values of Americans. Congressional leaders said action had to be taken to protect vulnerable citizens. Aren’t the sick, the weak and people suffering from mental or physical ailments in need of the most assistance and protection in this society?

Republicans are thrilled the new healthcare bill may pass in the house today. But I wonder, will their glee over a political victory be consolation to my parents and the loved ones of other sick people as they waste away from illnesses they can no longer get treated?

 

 

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare #healthcare reform

Why Does Congress Think It’s Okay That I Die?

Standard

I may only have two days left before I am handed a death sentence. House Speaker Paul Ryan and President Trump are pushing a new healthcare bill that would lead to my death or bankruptcy. You see, I have a pre-existing condition. Without the protections from the Affordable Care Act, buying, obtaining or keeping health insurance will, once again, be nearly impossible for me. Why don’t I deserve the opportunity to fight for my life?

I’m not, nor have I ever, looked for others to pay my medical bills. In fact, in the last 14 years I’ve paid $168,000 out of pocket for my care; not to mention the lost wages from my job. Yet, I’ve held down a full-time job, paid my taxes and voted in elections. I’ve been a good American. Why should I, as a taxpayer, have to fight for medical coverage when it is given to the people who represent us in Congress?

I am being asked to choose between keeping myself alive or losing everything I’ve worked hard to maintain because I was born with a condition that has no cure. Why is my life so disposable? How can confessional leaders vote in favor of a plan that endangers their most vulnerable constituents?

I’m not sure whether those who are determined to repeal and replaced so-called Obamcare believe this is the right thing to do for all Americans. I think they’re using this measure to settle a political score. Should human life  be treated like a political pawn or the previous gift that it is? Why Is no one considering my right to life?

I certain don’t believe those who penned the constitution, which guarantees the right to life, liberty and the pursuit of happiness, believed these rights were solely dependent on wealth. Clearly, our confessional leaders do. Without guarantees for pre-existing conditions will only the wealthy will survive medical trials? Is that the America they really want?

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare