...makes the medicine go down,
the medicine go down...
...in the most delightful way
- Mary Poppins
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| Spring Tonic, Norman Rockwell, 1936 |
It is the oddest thing.
As children we spend our life dreading medicine. The taste. The smell! And knowing instinctively that sneaky manoeuvres pulled by Mary Poppins-inspired grown ups never quite do the trick. We know it's still medicine, the sugar does not disguise it!
And now, here I am, preparing to do battle with my consultant, all for the sake of medicine.
America is in the process of approving the first treatment that might possibly be a solution to the incurable nature of Lupus. It is called Benlysta or Belimumab (funny name, huh?), and it is an investigational human monoclonal antibody drug.
I myself am on Rituximab, also monoclonal antibody therapy. So I must be on the right track. I know I am. So close.
But it is such a fight to 'deserve' the treatment. And be a good investment for the high risk. You find yourself fighting for a possible future you don't know for sure exists. Trying to prove the worth of your individual soul to a near stranger, a figure of authority, within fifteen minutes, without descending into emotion, becoming antagonistic, or losing hope.
As children we spend our life dreading medicine. The taste. The smell! And knowing instinctively that sneaky manoeuvres pulled by Mary Poppins-inspired grown ups never quite do the trick. We know it's still medicine, the sugar does not disguise it!
And now, here I am, preparing to do battle with my consultant, all for the sake of medicine.
America is in the process of approving the first treatment that might possibly be a solution to the incurable nature of Lupus. It is called Benlysta or Belimumab (funny name, huh?), and it is an investigational human monoclonal antibody drug.
I myself am on Rituximab, also monoclonal antibody therapy. So I must be on the right track. I know I am. So close.
But it is such a fight to 'deserve' the treatment. And be a good investment for the high risk. You find yourself fighting for a possible future you don't know for sure exists. Trying to prove the worth of your individual soul to a near stranger, a figure of authority, within fifteen minutes, without descending into emotion, becoming antagonistic, or losing hope.
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| Doctor and Doll, Norman Rockwell, 1929 |
I need the right words, wisdom and courage.
Send me some of yours ok?
10:30 am
Clinic 5,
Rheumatology,
Addenbrookes' Hospital.
Shaista, BELIEVE, with all your heart, that you are so totally worthy of this chance. You are young and beautiful and a radiant human being who writes wonderfully and inspires people all over the world. You add beauty and hope and inspiration to this sometimes dark old world and there is a future shining ahead of you. It is terrible that fifteen minutes in an administrator's office can make such a huge decision. I have to believe, in a universe of karmic justice, that because of the being that you are, the decision will be "yes". I so hope and pray that it is. Thank you for posting, so we know what is happening. We stand in solidarity with you, imagine us there, in rows, behind you, in that office WILLING the decision to be "yes". Keep posting. We need to hear from you. You are always in my thoughts.
ReplyDeleteHi Shaista!
ReplyDeleteMe and my cats wish you the best of luck! Does this mean you'll be on Benlysta if the HOD says "YES"?
I've fought too, just to get "CellCept" !! (I know, this drug is not new BUT it is considered expensive by our standard!)
Well,I think if the drug is meant to make you feel better, you'll get it. If not, maybe, it is just not meant to be - but, try!
Good luck again!
All best wishes and health for you in the new year. And now my two cents worth of opinion. Everyone keeps calling curing a ailment a fight i.e. fight against cancer, fight against AIDS, fight against obesity, fight against stroke etc etc. Why are we as human so aggressive in nature, we want to fight against everything, something, anything. I personally would like to have God guide me through evey minute of this life no matter what the challenges and frustrations and ailments I face. As I wrote in my blog, I am the branch that is connected to the vine and I will let God decide how to prune the branch so that I bear better fruits. Every problem has a solution, every ailment a cure, we just have to believe so.
ReplyDelete@lupie, thanks for the good wishes!!
ReplyDelete@Nil, I understand your frustration with the word 'fight', but it is not the disease or ailment I fight against. It is merely the arbitrary faceless corporation of the medical institution. On a human level we all deal with our sufferings and joys as simply and faithfully as we can, accepting our burdens as lightly and gracefully as we can.
Shaista, I am sitting here reading your words, crying. I hope and pray for you the very best treatment, the best hands, hearts and minds of doctors and staff to help you recover, mend, heal.
ReplyDeleteYou can do it, Shaista, believe, believe, believe.
Hope is the believe that something is attainable.
ReplyDeleteMay this year brings you goodies in terms of medical treatment, better medical care and miracle from the ever burreaucratic red-tape of the medical institution/corporation.
Here's to healthy thinking. God bless. Salute.
Sometimes it's the smallest most unlikely cause that makes something happen (like the butterfly effect). I pray for this.
ReplyDeleteFor some reason, on reading this, with the tantalizing hope that hovers here, as so, too, does the brooding threat of disappointment, there came to my mind the words of Rilke that were posted on the 'A Year With Rilke' blog ...
ReplyDeleteIt seems
our own impermanence is concealed from us.
The trees stand firm, the houses we live in
are still there. We alone
flow past it all, an exchange of air.
Everything conspires to silence us,
partly with shame,
partly with unspeakable hope
... and the meaning and impact of unspeakable hope seemed to flash clear to me for an instant. Much hope and luck to you, Shaista.