Get involved! Rare Disease Day!!

RDD_whiteRare Disease Day®: February 29th, 2016

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  Learn more about the history of Rare Disease Day.

The 2016 global theme, “Patient Voice,” recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside its sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign.  Over 80 countries participated in Rare Disease Day 2015.  To learn what’s happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.

Anyone can get involved in Rare Disease Day awareness.  On this particular site, U.S. participants can find, suggest and get involved in events taking place across the country.  There are also suggested activities for those who are new.

Join the conversation on Facebook, Twitter and Instagram! Use the hashtag #RareDiseaseDay to help make the day trend worldwide again this year!

 

A Funny Thing Happened…

littleboyI remember when I was 12 or 13, my brother and I used to make weekly treks during the summer months to the nearest public library.  The closest library to us was the main one that used to be on Peabody Avenue.  My frequent visits there are probably the reason why I love libraries and bookstores to this day.  Something will come over me and I will just have to go stand in the middle of an aisle of books.

Though summers are very hot and sultry in the South that still didn’t stop us from going. I liked the walk itself.  It lead us through the historic district of Midtown which made me feel as though I was peeping back in time.  We wondered out loud who lived in these large monumental houses with their walls of ivy and tall columns.  We guessed that they had to be rich or some used-to-be famous person now living quietly in the South.  Strangely though, I remember the way the trees made me feel.  They were tall, mighty, and stately – like kings and queens.  The boughs hung over the sidewalk protecting our small backs from the mean sun.  We were grateful for the coolness provided.  I remember how their roots passed the boundaries of the front yards and broke the sidewalks into.

After a while, we would finally reach the library.  First, we’d enter the downstairs area and perused through literature to visit Miss Havisham, Pip, Romeo, Juliet, and of course, Jane Eyre.  Next stop was the art section where Leonardo da Vinci, Michelangelo, and Rembrandt’s paintings left their mark.  Next, we would go upstairs where the music and videos were.  Even though having long thrown away our record player, the old musty wax albums were still fascinating anyway.  Any extra money we had was used to rent movies.  Like our tastes in books, our choices in videos varied as well.  We’d walk back home carrying our books or videos – laughing happily.

Lastly, we’d have to make the trek back home – which was fodder for fond memories as well. Especially on one occasion while walking under an overpass.  I remember it well, the one at Willet and Lamar.  Anyway, every sound was amplified underneath that bridge.  The cars sounded like trains going by and trucks sounded like planes.  So one day, while there weren’t any cars coming by, we passed through.  It must have been that way for a while because pigeons were everywhere – on the street, sidewalk, and underneath the crevices of the bridge itself.  We got midway underneath when a car shot by causing the birds to take off suddenly.  Their wings made sounds like gunshots.  Pow!  I was so startled I stopped in my tracks from fright.  When I realized what was really going on and turned to look for my brother, he had run at least twenty feet ahead, leaving me in the dust.  We laughed at that harder than the initial scare.  “Chivalry is dead,” I said.  “No need for both of us dying.  One gotta live to tell the story,” he kidded back. I still tease him about that today.

Now looking back, I realize how strange we were for children our age.  Why were we so interested in Shakespeare, Dickens, the Brontes, and the Renaissance Age?  But there we were, I can plainly see it now; he on one aisle and me on the other.  When either one found something interesting, it was discussed with as much fervor as our little selves could allow.  Till this day, this is the brother I have a special bond with.  We have our own inside jokes, gestures, and nonsensical goings-on.

Well, the main library on Peabody has moved.  It’s new and improved standing tall on Poplar Avenue.  My brother and I have grown up; he lives in the old neighborhood with his wife and two kids and I live across town.  You might have guessed that we don’t get to trek to the library anymore but another funny thing happened.  You go ask his son and daughter what’s one of their most favorite places to go and guess what they’ll tell you?  Right.  They like to go somewhere books are, and no, not necessarily the library (Barnes and Nobles to be exact). And yes, ages seven and four are a bit too young to appreciate Miss Havisham and Pip.  They prefer Cinderella and Builder Bob, but hey, it’s a start.  When I look at them receive so much excitement and joy from a book, it makes me remember.  I’d like to think I had something to do with that starting long years ago…during mid-summer, on my way to the library.

Let’s Define “Happy” New Year

Man JumpingLet’s define a happy new year or let’s go so far as to say, let’s redefine happiness in this new year.  New beginnings are a blessing to be sure.  You get to start over and do things a new and better way.  You get to start working on a better you.

This leads me to the point of happiness.  You can never have too much of it.  I have never, ever heard anyone complain that they were just waaaay too happy and needed to do something about it.  So in lieu of that fact, I absolutely had to list the points below:

  1. Accept that deep down we all need the same thing – love.  The people who frustrate us need the same thing that the rest of us need.
  2. Give our best to the world.
  3. Forget about being perfect.
  4. Work on letting go of grudges.  Everybody has weaknesses and do/say dumb things.  When you don’t let go, you are really destroying your own happiness.
  5. Accept your past.
  6. Hey, don’t pressure yourself to be happy either.  Into everyone’s life some sadness will fall – or something like that.  But if you’re not sad about something legitimate, give yourself permission to be happy.

 

The Wiz Live!

THE WIZ LIVE! -- Pictured: (l-r) Elijah Kelley as Scarecrow, Ne-Yo as Tin-Man, David Alan Grier as Lion, Shanice Williams as Dorothy -- (Photo by: Virginia Sherwood/NBC)

THE WIZ LIVE! — Pictured: (l-r) Elijah Kelley as Scarecrow, Ne-Yo as Tin-Man, David Alan Grier as Lion, Shanice Williams as Dorothy — (Photo by: Virginia Sherwood/NBC)

This past Thursday NBC aired The Wiz Live! My family and I decided to do a pizza night while watching the production. Great idea, right?

Needless to say after pizzas were ordered, picked up, sodas lined up, and glasses iced; we all plopped in front of the tube. Let me just add the adults were more excited than the children – or as my mother would say, ‘chirren’ – in the room. WHO DOESN’T REMEMBER DIANNA ROSS AND MICHAEL JACKSON IN THE WIZ?? And so who wouldn’t be excited for a reboot? Apparently, my niece, bless her heart.  Because at first, she just didn’t get it. She kept asking questions as if to say this makes no sense. I’m like, they’re munchkins; they’re supposed to look like that! What do you mean?? Haven’t you seen munchkins before?? Dawg!!

I’m serious about dem munchkins, honey…but on the other hand, is it sad that as a 46-year-old, you are the one defending the credibility of an imaginary people to a child??  Never mind.

To the review: I couldn’t have been more pleased. I enjoyed the newcomer, Shanice Williams’ freshness as Dorothy; Ne-Yo’s bold new dance moves as the Tin Man; Elijah Kelley’s athleticism as the Scarecrow and certainly David Allen Grier’s prowess as the Cowardly Lion. Who knew? Comedian David Allen Grier acting and sing ability was so on point.

Out of all three live productions NBC has aired – Sound of Music and Peter Pan previously – The Wiz Live! scored highest. The core songs and play were the same, but there were other changes that gave the play an updated and kicked up feel. It was a pleasant surprise.

Lastly, the best performances of the night were David Allen Grier for such an excellent show of talent and Mary J. Blige who tore it up as the Wicked Witch of the West. Hey, don’t take my word for it. Go to the NBC.com website and view it now if you haven’t already!

Two. Thumbs. Up!!

The Wiz Live!

David Allen Grier as the Lion and Shanice Williams as Dorothy in The Wiz Live!

THE WIZ LIVE! -- Pictured: Mary J Blige as Evillene -- (Photo by: Virginia Sherwood/NBC)

THE WIZ LIVE! — Pictured: Mary J Blige as Evillene — (Photo by: Virginia Sherwood/NBC)

 

 

 

 

 

 

 

 

The Ungrateful Wretch

snobThis time of year people everywhere are counting their blessings and are encouraged to have gratitude.  But what is gratitude?  Merriam Webster’s Dictionary describes it as thankfulness.  Why do we need to discuss being thankful or grateful?  First of all, think about it, you ever run into a thankless person?  How did that make you feel?  Right.  This is the person that cuts in line, doesn’t say anything when you hold the door open, steps across your path with pursed lips, and sends out her wedding invitations and so happens to forget to send a stinking note for that pricey whatcha-mabobbit that you bought.  These are simple things but yet they tell something about a person if such actions are done repeatedly.  This person is selfish.  And on top of that they may be miserable.

Consider, a person that is thankless is called an ingrate.  The listed synonyms for ingrate are ungrateful wretch and persona non grata.  Most have a general view of what these two words mean, but let’s dig deeper.  An ungrateful wretch is defined as ‘a miserable person who is profoundly unhappy or in great misfortune.’  Another definition goes further and says ‘a base, despicable or vile person!’  Persona non grata is defined as ‘a person who for some reason is not wanted or welcomed.’  Wow.  That’s deep.

An ingrate is a miserable unwanted person.  This is the person that rains on the parade by not showing his or her truest and deepest of feelings.  They might have a house – so what?  Or she might have a loving husband and kids – does she care?  Or I might have a reasonable measure of health – am I glad?

Cultivation of gratefulness starts with appreciating the so-called small things like the ones mentioned previously.  One can do this by meditating on the good things in their lives.  I’ve heard some busy people say that they rise early (before anyone else gets up) and take at least five or ten minutes to meditate everyday.  Is it still dark and stars are out?  Then a grateful person would give thanks for this gift.  Did your baby girl kiss you and tell you that she loved you the night before?  Then smile and warmly reflect on that.

Many people tend toward the negative.  We need to break out of bad habits and break into new ones.  Keep meditating on a daily basis.  The natural progression from gratitude is peace and deep joy.

Let’s not forget to actively express thankfulness either.  This can be done by simply saying thank you or writing a handwritten note of appreciation.  Life is not about grand displays, but many small ones.  Because we are living in a not so perfect world, we will continue to interact with ingrates.  This should not make us adopt their attitude.  Remember what an ingrate is?  We really don’t want to get stuck in that miserable place.

Everyone has felt that they have been that ‘persona non grata’ (unwanted person) at one time or another.  In this disordered life we have, negative influences can get the best of us at times.  When that happens, be careful.  That’s your gratitude slipping away.  Stop.  Meditate once again on the good in life.  It can be done.  We can all feel more grateful with practice, practice and more practice.  Write it down, say it to strangers, say a prayer, express it to loved ones, but continue on.

Remember – we owe it to ourselves to be better than we are.

Diabetes, My Father, and Me

little girl with dadIt wouldn’t take me long to isolate the period of my life when I truly felt like a grown up.  It had to be during the last few years of my father’s life.  He died of complications due to diabetes – kidney failure, a double amputee, multiple strokes and seizures.

No one ever tells you how to manage your life in a healthy way while taking care of a sick relative.  You just try to do your best.  I had one brother who would drive dad to doctor appointments sometimes.  Dad needed a lot of physical assistance and my brother would help with that.  I had another brother that assisted mom with car and house repairs.  My role?  I lived at home during this time and helped out with practical things like chores, cooking, sharing household bills, and part-time chauffeuring.  I also administered my dad’s medicines, which happened to be many and scheduled down to the hour.  This did not faze me; I expected this.  Hey, it’s my dad so it’s the least I could do.

What unnerved me was to see my father cry.  He cried a lot during the last years of his life and I never got used to it.  I guess I still had that childlike view of him, thinking that this is the man who could save the world and then some.  But even more than that is when my mother finally broke down emotionally.  This lady not only married the man who could save the world – she was his rock.  My rock.  And now my rock was crumbling… and on my shoulder.  I listened to her.  I cried with her.  I even advised her.  Me, advise her?  That was a first.

But there are two moments that stand out more than all others, however.  One was when mom was helping my dad with his bath.  She was obviously tired and it was late.  She was trying to get him out of the tub but was having difficulty.  The door was cracked and as I walked by she looked up in sheer desperation and almost begged, “Help me.”  I don’t know whether I was just too shocked or embarrassed to stop and help, but I didn’t stop.  I kept on by and went to my room.  I thought dumbfoundedly, No, you see, that’s not my role.  My brothers and I had specific roles.  Helping him in this area was not it.  This, however, would soon change.

One day, mom took an evening off while I sat with dad.  By this time, he wore diapers.  On mom’s evening off, she really didn’t stay away a long time – just maybe long enough to get her hair done and browse in some boutique or something.  This day was different as I would soon learn.  Dad was feeling sick and didn’t quite make it to the bathroom in time.  In fact, he was too weak to get up at all.  Now, I’m easily shamefaced, but I get it honest – from my father.  He was so embarrassed.  I don’t really know by what most though – that he made a mistake on himself or that his daughter would be the one to help him clean up.  We even tried to wait for mom.  I once heard the expression that when a child falls and the father bends to pick the child up, they laugh, but when the father falls and the child bends to pick the father up, they cry.  This is certainly true on more levels than one.

So, as I mentioned before, mom decides (and deservedly so) to whoop it up.  After a while, I gingerly enter the bedroom and tell him that I’m going to have to change him.  Without looking up, he simply says okay.  I get the necessary cleaning items and begin my work.  It was very important to me to leave him with his respect.  Afterwards, to my relief, his attitude was one of gratitude and humility.  I kissed him on his forehead and sat down in the chair beside his bed.  We talked quietly until mom came back.

I had resolved not to tell mom until later on.  However, he beat me to the punch and blurted out as she entered the room, “Well, your daughter treated me better than any nurse I’ve ever had.  I made a mistake and she helped me.”  At that point, I knew I had changed in his eyes.  It seemed that I had been so careful to give him his dignity and respect, but with those few words, he gave me mine.