I am faced with the imminent death of my daughter, Meaghan.
She might die on Friday when she gets her first infusion of Rituximab. Death is one of the known side effects. No kidding. It is rare, but it puts me in mind of serious thoughts.
Women are the statistical majority of autoimmune patients. Thus it seems a dark irony that women are in a slightly higher risk category for death by side effect of this medication. Perhaps it is par for the course. Would I feel this way if it were me who had to face the needle on Friday? What are the actual odds of a bad reaction? Does it even matter? Whether it is one in ten billion odds or whatever, still has the important part... the one. Which one is she? Is she the one?
Swinging the pendulum of fate... She might die, or she might come out with an improved condition. That much has been true since the day she was born.
So... How do I feel about that? I mean about my daughter maybe dying?
Numb.
Just bleeping numb.
Stuck in between hope and fear. Leaves me feeling a quiet calm akin to feeling nothing. Is this a good thing? It certainly makes it easier to function. Like being in the eye of the storm. Chaos rules all around, but here -- in the center -- it is possible to remain calm... How does that work anyway?
Given a choice between Hope and Fear, I choose Hope.
Meaghan has been flaring off and on most of this Spring. It is her first vasculitis flare since the diagnosis, so she and I did not know how to recognize it at first. Just the usual never ending daily wondering about little perks or drops in this symptom or that symptom, and wondering how and if this or that might be related to vasculitis. Is this just some "normal" symptom? Is that...?
What is a "normal" symptom when anything and everything might or might not mean something in relation to the vasculitis? Plus, when the question: "What does it mean doctor?" is met with --- Silence --- because the doctors are also trying to figure this stuff out. Talk about jumping at shadows! Chronic illness is really very complex.
Meaghan has to deal with this condition largely herself, but never alone. Like every other life skill, managing her condition is something only she can do well. As her parent I am always there, but I also encourage her to take the lead as much as she can to prepare for the someday when I am not there to help her.
She is learning that if you stick around long enough you get to learn how to discern the significant symptoms from the non-remarkable ones after some gaining experience on the roller coaster ride to vasculitis hell. And there is much good and bad advice alone the way, even from the initiated.
A sidebar...
Okay... So why is there no sanctioned mentor program in the larger vasculitis community? Why not figure out how to get more experienced patients together with those who are new to this so they can share what they know? I mean Shannon Morgan is great -- fantastic in fact -- but is there a larger effort to track down these unknown vasculitis patients and support them? Maybe that is our job, your job, my job. They are our kin if you think of it broadly.
Ahh... You say go to Yahoo and check out CSSISG, Saavy, Wegeners4Parents, VasculitisSurvivors, etc. etc. Good... Good... but what about the one on one approach? What about people who are not on the Internet? How to reach out to them so they know they are not alone?
That is what local chapters like CNMVF are for? Okay, more good... but what about those who cannot come to the meetings and also do not have the Internet? What about the children? What is happening with these people?
So, back to my topic... I have come to grips with the possibility that my child could die at almost any time, or with good luck and good treatment she could live to be a hundred years old. This freaky uncertain existence gives me perspective on life that I might only have approached in a purely academic sense prior to this past year. Eyes open instead of eyes shut. Knowing anything can happen, at any time, so why worry? But I do worry anyway. Can't help it.
She is driving a car now, and could get smashed to bits by a cement truck on the way home from school, so what is the difference? In fact a car accident is possibly more statistically likely than anything else she is dealing with.
She might even die in her sleep if her cat does not stop sleeping on her face. Just kidding... probably.
She will live, or she will die. What really matters is how well she lives while she is here.
So, you might expect her to stay in bed all day and never go out. Right?
She has had quite a few of those sorts of day. They are not fun.
Now, let me talk about illness.
Chronic illness I mean. Not the regular kind where people, "get sick then get well again with a pill." That does not count here. Whether it is the flu or any other acute condition... no matter. Go cry to someone else who will listen to you whine about being sick for a day or a week. Chronically ill people typically do not complain as much, because they know what it means to be really and truly ill. You are sick for a lifetime.
Chronic illness is a 24 hours per day, 365 days per year, ordeal. It is something you survive more than get over, because the entire point of it being called "chronic" is there is no cure. Moreover, it is not simple to diagnose or treat. You don't "get better" in the same way other people get better from an acute illness.
Wishing for remission is like wishing a deadly killer wolf which has been raiding your farm will go raid the neighboring valley farms for a while. You have some nights free of tyranny, but you always know that wolf can come back. So you must remain vigilant.
Acute patients take a pill, and maybe sleep-in for a day or three, then they get better. Chronic patients just have good days, and bad days. More accurately, you have the morning you can tolerate, and the afternoon where you wish you could disconnect your nervous system from your conscious mind, and the next day it might happen in reverse. There are good or bad periods in each and every day. It never ends.
It is like riding the roller coaster to hell, but of course the fear, uncertainty and doubt will torture you on the way there. Not to mention the pain. And to make things really interesting, let's take the whole family along for the ride so they can watch you suffer.
As a parent and caregiver I do not get to take my babies' pain away. I do not get to make it all better with a kiss. I have to stand by, mostly helpless, while she suffers. It really really sucks. So I often talk about this in terms of WE. We are a team, and We are suffering this illness, though do not think for a second that I forget she is the one with the actual disease. Still...
We are brave. We are strong. We are hopeful. We are so many other euphemistic things that it is tedious to even list them now. But We keep going. She keeps going, and I keep pushing her, picking her up, and letting her cry when the feelings of anger, despair, and literal pain and agony get to be too much for her to hold her emotions inside.
And I try like crazy not to let my emotional baggage leak out on her. I fail at that, by the way, more often than I care to acknowledge. But We keep going.
People on the outside never understand what these patients go through. Those of us who are close enough to mostly get it, still have this sure knowledge that we really have no idea, and never will... We caregivers do what we can to get into it, but mainly MUST maintain some distance to preserve our own "non-Prednisone inflamed" emotional reserves so we can be there to support the patient when our chronically ill loved ones feel like giving up. We have to keep going too.
So, I say again... You might expect her to stay in bed all day and never go out. Right?
Let me tell you... In spite of the vasculitis, she is living well.
She has friends and family who love and even adore her.
She is doing more than well in school, and excels above average at most of her subjects. This at a school full of very bright kids. She is respected by her teachers and by the peers who matter.
Before asthma stole her wind, and then peripheral neuropathy wrecked her foot, she had the pleasure to participate in sports and saw success as a starting athlete who played most of every game because of her valuable contributions to the team.
She has participated in arts and music. She spent several summers as a camp counselor. She has been involved with Junior Civitan, Model UN and Mock Trial. She is one of the editors of the school poetry magazine and is now working to found a new school publication for best student essays.
She is one of the 2009 Make-A-Wish recipients, and her first wish is to travel to England and visit the original 100 Acre Wood from the Winnie-The-Pooh stories. If international travel is disallowed, then she will journey to Disney World in Florida and have the kind of special access that Disney affords to Wish Kids.
She is going to participate in an EPGY Summer Institutes High School course this year at Stanford University. No small achievement just being accepted, and I have no doubts that she will do very well once she is there.
So yes, in spite of the vasculitis, she is living well.
But even with all that...
Because of the vasculitis, none of the rest of the good parts can be enjoyed fully without some of the shiny being ripped off.
Just ripped off the surface. But you know... it is still mostly shiny if you choose to look at it in just the right light. Just turn it this way, and that way, until you can see the glint...
Look for the shiny.
Perspective, I said... Yeah... This is a hard one.
A few minutes before I started writing this, I saw a mother pushing her invalid son in a wheelchair. He was old enough to be at least in High School, driving, dating, getting jobs, etc. Instead, he was tied in the chair to prevent him falling. He was drooling and yelling like a baby. It was impossible for me to understand what he was saying.
She just wiped his chin, and kept going, answering whatever he was mumbling that she has somehow learned how to decipher. I imagined how she must do EVERYTHING for him....
Just pause there and reflect for a moment on what EVERYTHING must mean for a seventeen year old boy...
... He probably has a bleak future compared to some. Compared to my daughter... and my future is perhaps better compared to this woman who is literally giving her life for her son. (Though in practice that is in a much less literal sense than some would suggest when they use that phrase.) Still, her quality of life has been set aside for his greater good. How much each caregiver sacrifices is highly relative.
That is perspective.
My daughter could be dead.
My daughter's condition could be worse.
These are small concessions to the afflicted, but they are concessions nevertheless. Nobody wants to be told, "Buck up Charlie! It could be worse!" But hey, lets face it, it could be worse.
That is perspective. It actually helps in some small way. I listed some of my daughters accomplishments earlier, and those are no small feats for any healthy person. For someone with autoimmune vasculitis, they are monumental achievements.
Just making it through a year of High School in spite of a great many medical related absences is an accomplishment. She has done that and much more by focusing her efforts. I did not do that. She did that. I am proud of her.
You have to look for the silver lining. You have to find the shiny parts. It is the only way to keep going.
So where is the stone mason? I want to commission a statue. At the unveiling, we will hear the Master of Ceremonies say, "For Perseverance in the face of overwhelming adversity, this statue is dedicated to... Insert the name of your vasculitis patient here."
So, yes. I am thankful for the shiny parts.
And I am worried about what Friday will bring. I hope the Rituximab medication will work as it has in so many others and bring her some relief. I worry that it might not live up to its billing, even though it seems the anecdotal evidence suggests that most CSSers who have taken it report they are happy with the results. We know her doctor will be careful and take appropriate precautions. So we have hope.
Survival is a matter of maintaining perspective.
Not a totally happy missive, but really just an honest one.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.
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