Wednesday, March 5, 2008




Hello Blogsville.
I have a secret to share.

I see your eyes light with interest. What news could he be about to release?

In our world, where members darkest fears are online perusals for others, secrets fall into the blockbusting category of Blogsville events. I must warn you though. I might not shatter the records with my disclosure. Don’t get me wrong. I do have a secret to tell. I’m just not sure if you’ll believe me.

You see, my friend is a super hero.

Special powers. Special abilities. Double identity.
I know what being a super Hero entails…
He’s got it all.
Consider.

He suffers from Sickle cell anemia. That most annoying of afflictions due to the finality of its diagnosis. Once you’ve got it you’re stuck with it.

It’s like walking to class naked in your final year in University with the words “Micheal Jackson is the sexiest guy I know!” hanging around your neck. You never live it down. You just have to live with it.
Same thing with sickle cell. There’s no escaping it.
My friend T? He must not have read the book on living with sickle cell. He doesn’t just live with it. He gives it life.

I was with him last week. That’s what friends do.

We visit each other. We spent the whole day clowning around. Laughing at our past silliness, planning new ones.

Our days where long roller coaster ride of infinite possibilities on the fun track, anything could happen. If it was happening elsewhere we sought it out. If it wasn’t happening we made it. The days where good most of the time. Other times they where fantastic.
And the nights..
Well for me. It was.
Not for T though.

You see T doesn’t just have Sickle cell Anemia. He also suffers from a leg ulcer that is common with sickle cell patient. Whilst Sickle cell patient are prone to occasional attacks of pain ( they call em crisis) leg ulcers are annoying side attraction. Too make it worse.They’re always there. They never leave and they always have to remind you of their prescence. It’s an annoying sore on his leg that refuses to go. It almost has a life of its own. Sometimes the sore closes to just a slight scratch on the skin, teasing us with the possibilities of its departure. Just when we are convinced that this time, just maybe this time, it’s going to final leave, the sore laughs at us and opens up into a wound that looks like the result of a gunshot.
Gunshot wound or screen crack. The sore is always there.

And it never stops hurting.
Never.

I’m not talking the slight dull ache that hitting your head against the wall can give you. I’m talking the pain that a surgery patient would experience if they suddenly ran out of anesthesia mid operation and then kicked him out. The sore that T is afflicted is one of respectful proportions. When I say pain. I mean real pain. Like the tale of the little mermaid , (not Disney’s romantic version, the real one) every time he takes a step he is hit by nerves reminding him that they are here to make his life hell. It is like he is literally working on broken shards of glass. The leg hurts like hell. The pain is so bad that most of the time his body is covered with sweat as he struggles to come to grips with it.
Sickle cell. Leg ulcer. Unending pain.
Sometimes you wonder why the gods don’t just pay less attention to Somalia.

I woke up one night last week to meet him sitting in a chair.

The room was dark and his was a shadowy hunched silhouette against the background.

He couldn’t even talk when I asked him if the leg was hurting. It was almost a silly question.

The leg always was hurt. It just sometimes hurt more than other periods. This time it was having a blast cranking out the pain. He just nodded his head weakly. He was hurting and couldn’t do anything about it. I was his friend and there was nothing else I could do. True there where drugs he could take. But the pain killers he used where pretty strong stuff. They where way up there with cocaine in the addiction monsters. It was really easy to get addicted to the drugs because of its soothing effect. My friend T had heard the stories of people suffering from addiction to the drugs he was using.

He was worried.

He was not going to add junky to his glowing resume of woe.
A brave decision perhaps.
Certainly, a painful one.


He might have been noble but I wasn’t.

Despite his murmurs on the contrary, I tore his room apart looking for the vial that would bring him relief. I eventually found it. He didn’t wince as I gave him the injection. He just lay there groaning softly.
Eventually the drugs kicked in and a dreamy look came to his eyes. He made his way to the bed to pass out. I watched him as he slept a drugged sleep and I wondered. Last year I had two tummy aches. Both instances had left me rolling on the floor gasping for help whilst I swore out my oaths to the cooks responsible for my gastronomical dysfunction.
I could not handle pain for one night and yet here was a person, my friend, who could, and who had, for the last 5 years.

It’s a wonder how much I have taken for granted in my life.
Things I do for fun he is unable too. He is, for instance, unable to drink coke. Not because sipping the sugary elixir will kill him but because he has been told that too much sugar in his blood does not help the wound. He cannot drink alcohol because 2 years ago his liver complained after a night of mindless boozing (vodka anyone?)whilst we celebrated our continued existence.


An even simple thing like dating is not so simple where he is concerned.
Cursed with the tinge of an SS blood group he is wary dating anyone with an AS tag.

Not because he is afraid he is contagious but because he fears that like, Damocles sword swinging over his head ,the knowledge that the relationship cannot go anywhere will ruin whatever little pleasure he might have derived.

That no matter how deeply he is in love with her they cannot be eventually wed. He plans on having children this friend of mine and he plans on having good ones. It is sad watching him meet a girl he likes only to watch him slink away when he finds that she does not possess that elusive AA blood type. There is no point to it he mutters when I insist that he just continues for the fun of it.
He doesn’t see my point.

Why persist in the endeavor when someone might get hurt?
In a world clouded by his survival of pain. He has made it his mission not to be responsible for others.

Last year I walked into his room and saw him surfing the web.

He wasn’t checking out the latest Shakira pictures or trying to track down J-lo’s number.

No.

What my dear friend was doing was checking for a prosthetic limb. He was so frustrated with his own leg. He was prepared to cut it off. That was how bad the pain was making him think.
He blogs as well as I. Given my infrequent forays here I’d say he browses more often than I do. It is an outlet for him to complain and yell. At least it started out that way. But lately he has become more cheerful about the Blogsville environment speaking more about his life and les about his pain.
That is my friend.
Half full never half empty.
Sometimes we seat and ponder about the people behind the names on Blogsville.
We are united in our perception of you all.
You’re all a delightful crazy bunch.

There is hope to be sure. There must be.
There just isn’t any in this country.
He plans on leaving at the end of this year. The only reason that he hasn’t is because of his studies. He requires at least a year of proper rest and treatment for the successful healing of the sore. We want it gone and we want it gone for good. He need s a year. The Nigerian school calendar is not inclined to give it to him.
When two elephants fight. The ground suffers.


And so we wait for the end of the year when he shall be done with his exams. We joke about his last day in school. I tell him I shall personally drive him to the airport and see him into the plane.
I shall stand on the runway and watch his chariot streak across the sky.
Thereafter for a year I shall loose a dear friend.
I console myself with the theory that with him away the girls will get to notice me more.
Sometimes it works.

As I sat there watching him sleep, noticing with sadness that even his sleeping position had been forced to change since his leg developed a sore 5 years ago( he holds his leg protectively in the fetal postion), I marveled at the strength in my friend. He goes through life everyday with pain mocking him in the background. But like Paul in the bible he doesn’t let a simple thing like unending pain stop him from his duties. He is the best friend a guy could have.

Fun, charming and very easy to push around.

Someday he is going to make a lady extremely happy but till then he is ours. He never lets his affliction get in the way of his relationship with people. He doesn’t let it affect his ambition to become so rich he doesn’t have to work for the rest of his life. He doesn’t let it affect him.

He is who he is. Without the pain. And so much more because of it.

It has been a week since then and we still go about our affairs.
But I watched him differently. There is no way I can know what it takes to live a life like he does. But I am convinced it is not easy. Living with pain and not showing it. Being brave in the face of you demons. Never allowing the pain to get you down.
It is the stuff of legendary stories.
I have found myself another hero.
My friend T.

I wish there was more I could do for him. I wish in a lot of ways I could make the pain go away, but I can’t. All I can be is a good friend and be there for him. And maybe ,one day, I’ll write a story about it. About my life with the great man T. And what is what like living with a person who re-taught me what bravery, fear honor and nobility was all about.
Till then I do the best I can. Waking every day with the knowledge that I hold dear.
My best friend is a super hero.

Hello Blogsville.
I have a secret to share.

43 comments:

Atutupoyoyo said...

Very heart rendering. Filled with plenty allusion and double meaning.

You are friends with Toochi right?

Atutupoyoyo said...

Actually the post is about duality in many ways.

I have a theory to share...

OluwaDee said...

Ur friend is indeed a super hero.

theicequeen said...

you know the weird thing? this pot will affect many people in many ways. for me, from the start it brought tears to my eyes. I lost a school mate to Sickle Cell anaemia less than two months ago, lost another one less than a week ago, rumoured to be the same thing.

Your friend is brave.my friends didnt live to the stage where they had the chance to be heroes..who knows, maybe its all for the better...

Asclepius said...

NICOSAN for the Treatment of Sickle Cell Disease




I would like to make you aware that there is a
non-toxic viable treatment for sickle cell in the
world and awaiting application for approval in the
U.S. and E.U.

Through awareness there may come availability for
those who so desperately need it. All it is going to
take is the effort of a few individuals, patients and
doctors to make this drug a reality in the U.S. sooner
than later. Although this drug was developed in
Nigeria, the man behind it, Dr. Ramesh Pandey is a
distinguished biochemist who has worked for the
National Cancer Institute's (NCI) Frederick Cancer
Research Center as a Senior Scientist, Head of the
Chemistry Section, Abbott Pharmaceuticals and
produced the first commercially viable generic version
of Vancomycin for Lyphomed Inc., a Visiting Professor
at the Waksman Institute of Microbiology at Rutgers,
the State University of New Jersey, holds patents for
biotechnology analysis and rare drug production
processes. He also holds several US and international
patents for paclitaxel and its new analogs. He is a
member of the Editorial Board of the International
Journal of Antibiotics and of several professional
societies. He has been awarded several grants from
NASA, NCI and NIH. The drug NICOSAN has been granted
Orphan Drug Status by both the FDA and E.U..



There is a relatively new treatment for sickle cell being
produced in Nigeria by an American company called NICOSAN®,
it's proprietary name is NIPRISAN® . It was developed on
the premise of traditional Nigerian plant based medicinal
practices for the treatment of sickle cell disease.

It has been tested through phase IIb clinical trials and
found to be highly efficacious. Phase III trials have yet
to be completed however it was approved for sale in Nigeria
based on phase IIb trials and toxicity studies which showed
it to be safe and non-toxic.

Double-blind, placebo-controlled, randomised cross-over
clinical trial of NIPRISAN® in patients with Sickle Cell
Disorder

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7GVW-4DS346T-1S&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=211981d545303693affebb8c012d2cac



Efficacy of Niprisan in the prophylactic management of
patients with sickle cell disease

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VS8-43DFJCH-G&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=10528ecbab3ec7e977301fb9f2688ef6



NIPRISAN -- Nix-0699 Toxicity Studies

http://www.biospace.com/news_story.aspx?StoryID=15890720&full=1


Niprisan (Nix-0699) improves the survival rates of
transgenic sickle cell mice under acute severe hypoxic
conditions

http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2141.2003.04536.x?journalCode=bjh


THE DEVELOPMENT OF NICOSANTM/HEMOXINTM
A DRUG FOR THE MANAGEMENT OF SICKLE CELL DISEASE.
HISTORICAL BACKGROUND

http://shestco.net/5_tech_park/nicosan.pdf


NIPRISAN Case, Nigeria
A Report for GenBenefit (2007)

http://www.theparliament.com/NR/rdonlyres/F46A1A12-0A1A-41DA-9F5D-A11486CA9BFA/0/Nigerian_Case.pdf




This drug is a major advancement in the treatment of sickle
cell disease unfortunately it is not available in the U.S..
Although the compound has been granted orphan drug status
by the FDA and the regulatory body of the European Union,
to date investigational drug applications for the approval
process have yet to be submitted. Getting a drug approved
in either area is extremely expensive. Until there is
funding available to proceed with the FDA and EU
applications it will be difficult for non-Nigerians to
obtain the drug.

I do say difficult but it is not impossible. If you have a
hematologist or hemoncologist who is willing to put fourth
the effort there are special dispensations available
through the FDA for the importation of unapproved drugs on
a compassionate use basis.



"Expanded access program (EAP). EAPs are typically designed
to provide widespread access to a drug that has proven
efficacy in clinical trials but is still awaiting FDA
approval. They’re similar to standard clinical trials with
a specific treatment plan and certain FDA requirements, but
they have looser patient eligibility criteria. More than
23,000 U.S. cancer patients enrolled in an EAP for Iressa
before it was FDA-approved, for example."

"Single patient use. This program offers an experimental
drug to an individual patient, rather than a group. The FDA
approves these uses on a case-by-case basis. Decisions are
based on other treatments already available and information
about the drug’s efficacy and potential toxicities."

http://www.curetoday.com/backissues/v3n3/departments/specialreport/index.html



To date I have no knowledge that anyone has sought any
single use or expanded access from the FDA for Nicosan.
Unfortunately regardless of the dissemination of this
information thus far no one has put forth the effort to
obtain the drug for use.

If just one person would start the ball rolling with a
caring and concerned medical practitioner it could open up
the drug for wide spread use by tens of thousands of
patients across the U.S. Unfortunately thus far the general
response I receive is that people don't believe that their
physician would be interested in going to this sort of
effort nor do they themselves seem to be inclined to seek
the use of a treatment that could potentially end their
crises.

There has to be at least one physician out there who has
enough care and concern for his patients to be willing to
put forth the effort necessary to obtain this medication
legally. I urge anyone who is effected by sickle cell to
approach their physicians with this information and attempt
to obtain this treatment not only for themselves but for
all patients who could potentially benefit from it's use.

We already know the benefits of the treatments available in
the U.S. and the E.U.. In many cases they are only
marginally effective or in the case of hydroxyurea cause
side effects so serious that many choose not to use it as
treatment. Here we have an opportunity to use a treatment
that has been shown to be highly effective, eradicating
crises in the majority of patients and reducing crises by
50% in the most refractory cases.

Although the clinical trial group was what the casual
reader might interpret as quite small it is common for
drugs which fall into the orphan drug category to use small
sample groups. Many orphan drugs have been approved based
on very small phase II and phase IIb clinical trials in the
U.S. In the case of FDA fast track status, a drug may be
approved during phase II trials if the drug shows
significant advantage over current approved therapies for
life threatening illness.

Fast Track Designation is a program that, if granted, is
designed to facilitate the development and expedite the
review of new drugs, thereby allowing the FDA to approve
drugs used to treat a serious condition or a
life-threatening disease with less safety data following
the conclusion of phase II studies, rather than phase III,
the normal practice.

The main criterion for a Fast Track Designated drug is the
potential to treat a life-threatening illness or fill a
major unmet medical need. Fast Track may be submitted with
the IND or at any time during the clinical development of
the drug. The Fast Track designation may allow a company's
application to follow Priority Review, Standard Review, or
a Rolling Review of the application.

http://www.fda.gov/CbER/gdlns/fsttrk.pdf



Nicosan by Western standards is an extremely inexpensive
drug. It is available in Nigeria without prescription at
$23/month for adults and child doses at $18/month.

Here is a link to the company and product website.

http://xechemnigeria.com/products.htm


I sincerely hope that you find this information helpful. I
would encourage you to forward and post this information
to any person, blog or website where persons effected by
sickle cell anemia can have access to this information.

Feel free to write me with any questions you may have.

NicosanForSickleCell@yahoo.com

darkelcee said...

carl, this post brought tears to my eyes. thanks so much for this

MAN T

for enduring the pain
for the courage to go on and suceed
for the determination to make your life meaningful againt all odds
for the courage to face the unknown tomorrow (i would have given up i i were in your shoes)..........
You are indeed my HERO

Lighty said...

To our super hero T. u're truly a hero. thanks 4 sharing carl. this was heart felt.

Rayo said...

I have to confess that my eyes welled up with tears reading this post. The best you can do is to continue viewing him as a superhero...as will I.

Sherri said...

what a brave dude!
i wish i could just reach out and hug him! and u
God bless him.

Queen of My Castle said...

**Regaining my composure**

Very heartfelt and rendering indeed. You are making us love him even more than we already do.

onydchic said...

Very touching story. I had a classmate that died from it a few weeks to our graduation, it was tragic. Your friend is very strong. It's fascinating how many people are out there, that we see everyday, battling some sort of pain or the other.

Onome said...

a very touching one dat brought tears to my eyes...i cant handle pain..i dont know how to cope with it...i doff my hat to whoever does...God is with ur friend T.....Always!!

princesa said...

My heart goes out to your friend T.
I pray he finds a solution to the leg ulcer soon.
Will put him in prayers.
Carl this was beautiful of you.

fantasy queen said...

its crazy, and beautiful that you are a friend indeed...
i claim to go through pain, but this is nothing compared.
you know, i've taken to praying fot T, you cant help but love him, i mean hes so positive you'd never know somethings wrong.

now is a strenghtened resolve to make you my best friend!

Jaycee said...

Half full, but never half empty...He is who he is. Without the pain. And so much more because of it.

Dear Carlang,

These words really touched me...I have a lot of respect for your loyalty to ur friend. That's all a friend can ever ask for, to be there whether the sun shines or whether the rain falls, making the weather and the storms really insignificant.

Ur friend is indeed a super hero, I gasped many times as I scrolled down the length of this episode...filled with emotions I cannot really describe...filled with a pain that cannot be compared to ur friend's, yet still filled with an indescribable JOY in knowing that everything WILL be alright...

:)

UndaCovaSista said...

Your friend soulds like an amazing person. I wish him all the best...

bumight said...

I don't even know what to write. will keep Super T (super ted?) in prayers, and pray school gets done fast.He has such a positive attitude, its amazing!
@ T: I know u'll read this, I'm AA, lol!

geisha said...

u posted this twice... T for Twice the man eh.
you're the lucky one.

Naapali said...

Carlang ni. It is only fitting that the first comment should be from Atutu. As I read this I kept thinking of his tribute to his friend Izehi. I thought about how wonderful it is to see young men truly relish their friendships and share the pain that accompanies joy. One of the two people I admitted yesterday was in a sickle cell pain crisis. He of course enjoys the benefits of western medicine but suffers from the same social stigma that people who live life in pain endure. He is poor, has lost his left leg below his knee to amputation, poorly educated and cannot work or keep appointments. He also does not have Carlang as a friend.

I wish your friend well, if there is any way I can help, Carlang, you know how to reach me, please do not hesitate to ask.

Zephi Fahrenheit said...

with watery eyes I read this post...T is a strong soul,more especially what wonderful friends he has around..

Naija Chickito said...

Oh My, O my. What a wonderful tribute to a great person. He is a strong guy...God bless you both.

Carlang said...

Hi everyone.
I really dont know what to say.
I'll write a more personal reply to each of you but till then..
I'm really grateful.
You're all a delightful crazy bunch!

Jaja said...

Hi Carl,
This was very touching to read.Whe one reads something like this, it quietens you and maybe helps you see better.

And you put things down in a very clever way.

I wish T well.

UnNaked Soul said...

God bless T as he hold his own. We hold this with you T.

Well done Carl. Well done!

Ms. Catwalq said...

I am somewhat comforted by the fact that in those times like that night, he has people like you in his life.
He has been strong so far and he just has to continue to be so. So, May The Blessings Be....

guerreiranigeriana said...

this was really touching carlang...i am also assuming your friendship with the same person atutupoyoyo identified (because clearly he is the only person who you could have labeled as such right?:)...i am curious what t would write about his dear friend carlang...it is interesting how God places people in our lives and us in theirs...

...thank you for writing this...it reminded me...

N.I.M.M.O said...

Toochi is strong because he has a friend like Carlang. GOD no dey make mistake.

We all have super heroes in our lives but don't look up for they don't fly in from the stars.

Just look beside you.

Yes, there she is.

shalewa said...

toochi is brave and is blessed with a friend like carl,what we all need(carl don't let ur head swell).This only makes one thankful to god everyday.Would put toochi in prayers.

chichi said...

really moing post and very inspiring as well; it makes one think and reflect indeed... and makes me happy that Love,Loyalty and compassion is still here with us, it is still here in us.

my eart goes out 2 u nd ur friend.

Afrobabe said...

Awwwww this is the best and most heart touching thing u have ever written...

I have a friend with the same affliction...she parties like mad and has boyfriends all over the place...ppl wonder why she is so loose, I understand her...she thirsts to live a normal life...the best u can do is be there for him, I dont even need to tell u that as ur post shows u are....

i would be proud to have a friend like u...

36 INCHES OF BROWN LEGS said...

it is posts like this that make me happy i didnt maryy Lush, how do deal with knowing ur child is going through so much pain? this was deep

SOLOMONSYDELLE said...

Heeuw, superhero indeed. May God bless him and you, his friend, Mr. Carlang.

As I read this, C, you brought tears to my eyes because I envy you and Toochi. I won't go into it but think I'll take this opportunity to say RIP to Vivienne. Ol' girl, I miss you gan!

NIGERIAN CURIOSITY
IT WAS SO MUCH EASIER WHEN I ONLY HAD ONE...

guerreiranigeriana said...

twas a challenge you left for me...okay...i accept, although you have already started, abi [see enrique piece]...happy writing...how is toochi?...update!!!...

anonymous gal said...

Gosh 1st time here and i have tears in my eyes.I hv a friend wit sickle cell and the crisis is not easy 4 me-that has to watch and see the pain she goes thru.
Yes ur friend,my friend and all sickle cell pple are heroes

UndaCovaSista said...

Can we expect an update anytime soon, by any chance? Please? :)

Che-e-ly said...

Carl, U r making a terrible mistake calling T a super hero. He's not anything short of a modern gOD. am sure he shows up for u and, from what u said, already considers d pain of possible spouses if they bear kids with the same ailment.

I don't know what to call him truly but super hero kinda ridicules it, like super man; movie-like. To have lived this long, when lots of his peers had long died, and made it thus far, irrespective of his setback, please, let's call him WARRIOR. Life itself is a war.

Arewa said...

oooh how i have missed u and reading ur blogs.. better late than never ei...

I know and understand exactly how u feel about your friend having to battle with sickle cell and his leg ulcer because my sister also suffers from sickle cell anemia and i have seen her at her very worst especially in crisis.
I know she use to suffer from ulcers as well ut they stopped years ago. Her situation was so bad that she was avised to seek medical help and better traement in the UK ABOUT 16 YRS ago as doctors in Ghana felt that sjhe may not live beyond 25. She is now 37 and still going strong.. she doesnt suffer that much with the crisis except in the winter when she is prone to really bad cold and flu. But there are other things that have been happening to her because of the sikle cell. She now suffers from some bak pain because her spinal cord is very brittle and is broken in two places.... but she is iundergoing treatment at the moment and i must say that ahe has been very brave although i know that it gets her very depressed at times... I could go on abt her forever...all you need to do is to continue supporting your friend and be there for him ..... x x x x

Supergirl said...

Your friend T carries with him the spirit of life. Sickle cell cannot control him, its only a distraction. Point of correction, you arent stuck with the disease forever after diagnosis because God can take it away. I like his zeal for life and i see him prospering beyond imagination. He is going to live beyond 80 and will marry the girl of his dreams. They will have lovely kids and will see their grand kids. He should just believe and trust God to takecar of him and he will be okay. I know this categorically because i am a Superhero too and i suffer from same (thats besides the leg sore o). Keep being his good friend, your love and support can change the world.

Aphrodite said...

Thanks for sharing this secret with us carlang.
Your friend is really remarkable. You are too.

guerreiranigeriana said...

oya, carl...where are you?...i hope you are well...maybe busying scribbling your piece for atutu's challenge...that thought pleases my mind...

Florida of Free Spirit said...

this is really inspiring. i can't imagine wot pains ur friend is living with. so very sad.

on a lighter mood, how does he hope 2 make love 2 a babe with him in so pain????? if na me b d chick, i go fear o. say e go die on top me

ogonna said...

oh carl.. that was lovely. hope he knows too wat a gr8 friend he's got. i cant even begin to imagine wat u both are goin thru but i respect it.

Shubby Doo said...

I cannot even start to fathom what it would be like to choose to cut off my leg...to see that as the better option...people endure too much in this world. I wish your friend strength.

The calibre of the friends goes a long way in determining who you are and who you choose to become.

You are both blessed.

You say friend is a superhero. Instantly I believed.

The post shows that your friend has inspired you (and now us) to truly contemplate full treasure of every moment...to see that each moment ends as the instant begins...the instant I read this I felt a limitlessness...you placed joy into this Carlang with a C...I salute you!