Ensuring A Future With Chronic Illness

So I don’t mean by the title of this post ensuring a future in which you end up chronically ill.  What I mean is, ensuring that despite chronic illness, you have a future.

For the past few years since I got sick, I have done a lot of soul searching.  Who I am?  Who is the person that I want to become?    What do I want to do with/in my life?  What are the important things that I want to focus on and give what little energy I have to?  These are just a few of the myriad questions I have asked myself.  And finding the answers hasn’t always been easy or clear cut.

But there was one thing that I did put my mind to.  That I am going to finish graduate school, regardless of what anyone says or does to make me think that I can’t.  But this comes with a pretty big caveat…      

I can’t give 110% anymore.  I can’t get seduced by the idea of it.  Because if I want to survive, if I want to have a future, I have to have balance.  I have to be able to distinguish between the various aspects of my life.  I can’t let one single identity become the only one that I can relate to. 

That person and that life don’t exist anymore.  They can’t.  They are not commensurate with being happy AND as healthy as possible.  The person that lived that life was a naïve college student who believed that the future was limitless, full of possibility, and more important, full of an infinite amount of time.  But for those of us who are chronically ill, time is a luxury we simply don’t have.  So if I seem to get hung up about how long it is going to take me to finish graduate school, how old I will be when I have my PhD, if and when I will get married and have children, it’s because time is elusive and fleeting.  And I know that because in some ways, I have been forced to think about my mortality in a way that other people my age haven’t. 

When I gave 110%, I had no life outside of school, not another single identity that mattered, and look where it got me.  Sick.  SICK.  So what was the purpose of working myself to the bone?  To ultimately learn that it wasn’t worth it?  That it took me getting sick to realize that there is more to life than how well you perform in school or how successful you are at work?  Honestly, for me, coming to this realization has made me feel like a weight has been lifted off of me.  Like I don’t have to live a lie for my entire life.      

One thing that I thought I had been successful at conveying, but recent conversations make me think that I haven’t, is that my graduate school career is not going to be typical, and that’s okay.  I am not the “normal” twenty-something who only has graduate school to worry about.  I have two full time jobs to contend with.  Because in order to be competitive in a rigorous academic environment like the one I currently find myself in, it will be at the expense of my health.  Because if I am going to be in that kind of environment, I am going to want to be competitive, but being competitive means putting career first and everything else second.  And if there’s one thing I’ve learned (the hard way) since getting sick, it’s that putting my health second to anything is only to my detriment.   

I have accepted my reality.  And now it’s time for others to do the same. 

If my head or my heart hasn’t seemed like it’s 110% in graduate school, it’s because it’s not.  And it can’t be.  My life has taken a series of turns over these past few years, and honestly, I’m amazed that I’m still standing, let alone trying to finish up in graduate school what I set out to do. 

But if graduate school means ignoring a part of my life that is a full time job in and of itself, well, then it’s pretty obvious to me what has to go. 

My actions, living my life the way I see fit, isn’t a dis to my committee or me thumbing my nose at the profession.  It’s me trying to ensure that I have a future.  And while that future might not take me on the “prescribed” routes based on the degree that I will have, it doesn’t mean that my future can’t be equally as bright.  But if I’m sick to the point of not functioning, or I’m dead, well, that means not really having a future at all.  And the responsibility for that will fall squarely on my shoulders.    

As much as I can control the future, I have to guard myself from the naysayers and the Debbie Downers.  I have to live my life the way I want to live it, on my terms.   I’m breaking with the past in order to guarantee my future.  And that means fighting to maintain balance, even though there are always things trying to tip the scales.

The Right To Live And The Right To Die

A few months ago I watched, “You Don’t Know Jack,” the movie where Al Pacino plays Jack Kevorkian, or the man known as “Doctor Death.”

And it got me to thinking.  In the movie, Kevorkian blames doctors for selfishly keeping people alive who have no quality of life.  That’s very subjective.  I’m sure that on my worst days, somebody would think my quality of life is pretty bad.  But at least for me, right now, my quality of life is relatively good, all things considered.  I’m not planning on jumping ship any time soon. 

But what about some of the patients Kevorkian assisted in suicide?  Some had Lou Gehrig’s Disease, Multiple Sclerosis, and debilitating and incurable cancers, among others.   

People asked to die.  Some had attempted to take their own lives, but had been unsuccessful.  They sought Kevorkian out, not the other way around.    

What if, when everyone turns 18, they are handed a pill, a suicide pill, like what they give to astronauts and some politicians, in case they get stuck in space or are captured by the enemy (at least in the movies).  We would all have one, riding around in our back pockets, a symbol of knowing that we have a choice.  That there is an out if we want one. 

Hospitals offer up advanced directives, DNRs, and power of attorney. 

And that’s okay. 

I’ve certainly been asked if I wanted additional information about them during my two hospital stays.  And it irked me.  On one hand, I thought maybe things were worse than I was being told.  On the other, I felt like giving in to such things at such a young age would simply make it a reality that I would die young (or maybe it’s my past obsessions with people who have died young, like Evita and Selena, that make me feel that way).

In theory, we are supposed to make choices for ourselves.  And we would like to think that if and when the time comes, those choices will be carried out.

While on the surface it may seem that Kevorkian is an enemy of modern medicine, the movie paints him as a sympathetic character.  Someone who truly believes in what he is doing, and this is only furthered in the portrayal of ill patients who genuinely wanted to escape their constant and unending pain.  These people wanted to make the decision while they were capable of doing it on their own, and so they did. 

Obviously, that’s not an option in all cases, as in, for instance, when someone ends up in a persistent vegetative state.  At that point, that’s where things get really dicey, and this has been played out in the media at various times. 

So I wonder.  If we were given an out, the ability to say exactly when and where the end will come, would we use it at a desperate moment, possibly in a situation that would ultimately resolve itself?

You know, I don’t think so.  The human spirit is pretty resilient.

But then again, I’m unsure.  In a post I wrote several weeks ago, I talked about prednisone as an out for the pain I was in.  But if I had a cyanide pill, at that moment, when I felt like the world was crumbling down around me, would I just have assumed end things right then and there? 

It’s a scary thought.  But shouldn’t we be the ones who define the end of our world, as we know it?  If astronauts and politicians have an escape clause, why don’t the rest of us? 

I’m not saying that I’m an advocate for suicide.  But I’ve been in pain, pain so bad that I would have given anything for it to end. 

And I think this argument transcends political and religious beliefs.  It gets at something deeper. 

In the movie “Wit,” which I also saw recently – and wouldn’t recommend for anyone who is ill – Emma Thompson has stage 4 ovarian cancer.  She is DNR.  At one point, the resident said that they never expected her to live through all eight experimental chemotherapy treatments.  When she codes, the resident ignores the DNR order, in an effort ultimately to prove that it was the cancer, and not the ridiculous chemotherapy treatments they were giving her, that kill her.  

The point here is that DNR is subjective, and not necessarily always heeded.  So if you can’t rely on that to get your wishes across, what or who can you rely on?   To me the answer to this question is obvious.  You can only really rely on yourself.  Which brings us back to the argument about a suicide pill.   The point of it, aside from what it does, is the power and control it gives to the person who has it in their possession. 

You say when.  You say where.     

I’ve been working on this post for awhile, so it’s a little weird that Jack Kevorkian died in the middle of my writing it.  Some say that he was down to about 70 pounds when he died.  There are rumors of kidney disease, Hepatitis C, and liver cancer.  He was an allusive character.  But in some ways, I think he was ahead of his time.  After all, he did get his MD degree from the University of Michigan, the very school I go to, that espouses itself as the home of “The leaders and the best”.  

Obviously, I wasn’t present (or necessarily even born) to be able to comment on his methods, the times that his rudimentary inventions didn’t work as planned, or much of the controversy surrounding his life. 

In doing some digging, I found that Kurt Vonnegut wrote a book in which he has a series of “controlled” near-death experiences, where Kevorkian helps him meet people in the afterlife, but then he returns to earth.  The story takes place in the lethal injection room of a prison in Texas.  Oddly enough, the book is called “G-d Bless You, Dr. Kevorkian” (1999).  Were the two really friends?  I guess we’ll never know.  But in Vonnegut’s imagination, he has all of these interesting experiences until Kevorkian is arrested for murder.  Apparently Vonnegut was a fan of Kevorkian’s.  Why else would he have written such a laudatory book about him? 

And there’s tons of irony here.  Vonnegut turns the man known as Dr. Death into a hero, saving his life over and over again.   But maybe this odd display by Vonnegut tells us something more important about the legacy of Kevorkian.  Maybe he was a hero, by allowing people who no longer wanted to live the chance to escape.  There weren’t any do-overs for them, though, and there certainly aren’t any for him.  Maybe by granting people death on their own terms, he actually saved them from lives that would have been full of pain and misery.  I don’t know.  I can’t ask Kevorkian and I can’t ask the people he helped to die.  And I think that’s what makes this such a touchy subject.  There is so much that is unknown, and that we will never know, about him and about them.  

Is it ironic that Kevorkian had a “natural” death in a hospital.  Maybe, maybe not.  I think the real question is: was that his choice?  Was that what he wanted in the end?  Because if it was, then he stayed true to his mission.  If not, well, he should have gotten a better attorney to see that his rights were carried out. 

In many ways, it’s surprising to me that he went quietly.  I always assumed that his end would come with some of the bravado that surrounded his life. 

But if there’s one thing that Kevorkian brought out with great relief, it’s that modern medicine doesn’t have all the answers.  Doctors play g-d all the time.  I think it’s time that we played g-d a little bit, too, at least in our own lives (and deaths). 

Currently in Britain, author Terry Pratchett, who has Alzheimer’s disease, is currently fighting for his right to die, suggesting a take-home “suicide kit”, allowing terminally ill people to end their own lives.  He also hopes that his death will be broadcast on British television.

This example suggests that the death of Kevorkian does not mark the end of the discussion about the merits and drawbacks of physician-assisted suicide.  To the contrary, it seems to me that the conversation is only just beginning. 

Patients For A Moment: Down But Not Out Edition

For this edition of Patients For A Moment, I asked the following question:

What gets you down, and what do you do to pick yourself back up?

I sincerely appreciate the honest and open responses that the participants in this edition provided:

Brittney, from The Road I’m On, talks about a variety of issues in her life that have contributed to depression, seeking out therapists, and trying to find other means of dealing with hard times, in the post, “Is That A Dark Hole I See?”.  She suggests that writing is one of the most therapeutic activities for her, and I couldn’t agree more.

In the post, ‘don’t let it bring you down’“: PFAM blog carnival”, Phylor of Phylor’s Blog explores some of the adventures of her “past life”.  She calls chronic pain and depression “evil twins”, and she tries to send them on their way with thoughts of butterflies and sunshine.  

Kitty from My CFS writes about being fed up with making changes that don’t seem to work, only to go in the other direction when she eats the things she’s not supposed to.  She calls herself “bad kitty!”, but I think she’s being too hard on herself.  Sometimes it feels too bad to be good.

In the post “On moping”, Helen of Pens and Needles Pens and Needles talks about coming to terms with not being able to do things because of illness, but that’s not really what gets her down.  What gets her down is being in pain from doing nothing at all. 

In my post “The Dark Side Of The Moon, The Underbelly Of My Soul”, I (Leslie from Getting Closer to Myself) talk about hitting a rough patch recently, and feeling pretty down about things. 

No one, including myself, was really able to answer the second part of my question.  I really put it in there because I felt like I’d get people down if I didn’t, but I guess sometimes just making it through is the best we can hope for.  Sometimes all we can do is hope that things will get better.

And sometimes when you are down, all you can really do is give the world a big f*** you, Cee Lo Green style…

The next edition of PFAM will be hosted by Una Vita Bella and will go live June 22^nd.

Guest Blogger: My Sister Molly

I haven’t talked much about my family on my blog, not because they aren’t a huge part of my life, because they are. I haven’t talked much about them because this is my story. I’ve been public about it, but didn’t want to put them in a more public eye than they would be comfortable with.

However, my aunt and I recently did the arthritis walk, and my aunt, sister, and I did the lupus walk. Given this, I figured I would give my sister the opportunity to share a bit with you, from her perspective.

My sister is 16 years old. She will begin her senior year of high school in the fall and is preparing to apply for college.

How would you describe our relationship?

M: Since Leslie and I are nine years apart, our relationship has grown over the years. I think that we have become better friends and sisters for one another. We know that we are there for each other, and we enjoy so much more every moment we get to spend with each other (I think and hope Leslie feels the same way). Even though I mess with Leslie (probably a little too often), I know that when and if she needs me, she will let me know.

I agree. Molly and I are nearly ten years apart. I think it was difficult when she was younger and I was a teenager. I think Molly and I have become better friends over the last several years, when she entered high school and I moved out to live on my own.

(And yes, I'm older, but she is taller...)

What do you know/understand about my illnesses?

M: Honestly, I know a lot more than one might think, because of some of the classes I am taking at school. I know that Lupus and RA are both autoimmune diseases, where healthy tissue is attacked by your body’s immune system. One’s body cannot respond effectively, and most if not all of the effects from RA and Lupus are chronic. I also know that Lupus and RA have a huge impact/ side effects on the patients and those that are involved with them.

Can you tell from this answer that my sister wants to go to medical school in the future? I’m impressed!

At what point did you gain this understanding? I was diagnosed a little over three years ago in 2008.

M: Throughout Leslie’s journey, I was periodically filled in on what Lupus and RA were. From the beginning I was aware that they were both recurring illnesses, and I knew that Leslie (in whatever capacity the diseases would affect her) would have to deal with this for the rest of her life. Like I said before, some of the information I learned in my AP Biology class.

Oh, AP Bio. She’s one smart cookie, that sister of mine!

How have my illnesses impacted your life and/or our family?

M: Leslie’s illnesses have definitely impacted my family’s life more greatly than my individual life. Sometimes hospital visits may have gotten in the way of homework or hanging out with friends, but now and even at the time, it did not really matter. It was my responsibility to be there, in the best or worst of times, to support Leslie as much as I could. As far as family is concerned, everyone has been affected be Leslie’s illness, but I would not say in a bad way. We have rallied together, a support network of Rott’s ready to fight for Leslie, but not just Leslie. In general, we have become much closer as a family (we were always very close) and I absolutely love that about us. Even though it can feel like I am being watched by big brother (mostly my mom) it is good to know that I have people always watching my back. Hopefully, that is how Leslie feels, too.

What is it like to have a sister who is chronically ill?

M: This is a really tough question because some of my closest friends do not understand the effects Leslie’s illnesses have on me. I have mixed emotions, some that it is just really strange and some that feel so sad because Leslie is chronically ill. The strange part is the part that is still naïve, which still does not understand exactly what Lupus and RA are, and when people ask how awkward it is to say, “Oh, well I don’t actually know, but I will ask to find out exactly what it is”. The other side, the sad side, is the fact that all I can do is sit back and watch and hear what happens. I can’t stop Leslie’s itching attacks or pain, so I have to be there, to support her and most importantly, to make her laugh.

Has our relationship changed as a result of my illnesses? If so, in what ways?

M: Like I said before, I think that we have become a lot closer since your illness, and since we both are old enough to know that we are sisters, we don’t have a choice, and we always will be (and I can’t imagine being anybody else’s sister). In general, we have learned to share better  and be more appreciative of each other. I have definitely learned so many things from you that I always believed you would teach me, and I cannot thank you enough for that.

What has influenced you to take part in the lupus walk and become an instrumental part of “Team Leslie”?

M: I just want Leslie to know that I support her, and if I can walk to show her that I am vested in finding a cure for her and those effected by Lupus, then I will. I could not be more proud to be part of such a cool team, and doing it with Leslie and my aunt is just icing on the cake.

What would you say are our happiest/proudest/most favorite moments together?

M: Most family moments are pretty funny. Scattergories is all I have to say for one of my favorite family moments!!! Now for Leslie and I, my all time happiest moments with Leslie are the times where we just chill together. The times, where we can be in the same room, watching a movie or just laughing, that is the best. Quiet or loud, annoying or off tune, does not matter, special sister moments that I will never forget!!!! Leslie, I love you so much, and want you to know that a girl could not ask for more in a big sister or friend.

Thank you, Molly, for being my sister, and for being the laughter through the tears. You’re the best little sister a girl could ask for. I love you!