I’m finally out of the hospital. I got out last Friday. Naturally, things just couldn’t go smoothly and I ended up facing a new conglomeration of complications. After surgery my body began to swell, taking on fluid at a rapid rate. On top of all the pain associated with the operation itself, this time I had the added agony of fifty pounds of fluid suddenly engulfing my entire body. Even now, all this time later, parts of me still don’t look human. I’m forced to type this out with one hand because I simply can’t get myself into a position where I can type like a normal human being. I’m a mess, a big painful mess.
One of the nurses at the hospital said that if this kind of rapid swelling had happened to an elderly person, it would have killed them. I don’t know exactly what caused it, I don’t know exactly how it happened. But I know I can’t do this anymore. Everyone keeps telling me how well I’m handling all this, that my supposed strength is so inspiring. I’m so tired of hearing that. I’m so tired of people thinking I’m so strong, because what choice do I really have? If I could make it all stop, if I could somehow walk away, I would. Because I’m crumbling under all this weight; the weight of all this unending pain, the burden of knowing that this is what my life will be. Facing the reality that this disease has stolen my life, my dreams, my plans, it’s so agonizing that I don’t know what to do anymore, I don’t know what to look forward to, I don’t know how I’ll ever be able to plan for any kind of life, because it keeps getting taken aaway, only to be replaced by more weakness, more pain, more sickness.
I wanted to do so much. I had so many things figured out, laid out, worked out. I knew what I wanted and I knew how to get there. But I’m finally realizing that in the past year, everything has been turned into a pipe dream; impossibilities that will forever remain unfulfilled wishes and dreams.
I wanted to race cars. I have a natural knack for fast, controlled driving. I had my path laid out, everything planned. When I think where I would be right now if it weren’t for this disease, it hurts so much more than the physical pain I’ve had to endure. I know now that it will never happen. It can’t. I’m simply too fragile. I don’t have the endurance, I don’t have the physical strength, I don’t have the tolerance for heat and severe strain. I can’t imagine all of that will magically appear, because this disease isn’t going away. Dercums Disease is my life now, it always will be, and it’s entirely incompatible with the rigor of racing. It’s no use deluding myself anymore, it’s just no use. I’m simply too fragile and I always will be.
So where does that leave me? I started thinking about school again; Courtauld is still holding my acceptance in London. I could go back to my old mainstay of art history. But is that really any more practical than racing? Can I take on a typical class load of 40 hours a week or more? No. The endurance just isn’t there. And even if I went slow, taking a few extra years to finish my degree, what would that really accomplish? How could I ever sustain myself in any kind of career when my pain is so unpredictable, when somedays I can’t even get out of bed? What does that leave me with?
The overwhelming pressure of nothingness is so frightening. I want so badly to do something, anything, with purpose, with responsibility, with the rewards of a job well done. But when your body refuses to cooperate, what do you do?
My days of accomplishment are behind me. I’ll just have to be satisfied with PotterWar, The Daily Prophet, and my other random exploits. Because what do I have ahead of me? More and more surgery, and for what? Just so I can live long enough to make it to the next round of operations. What kind of a life is that? I thought I was done being sick when my toe was amputated. I don’t think I can take much more of this, especially without a life to look forward to.
So are those people right? Am I handling this well? Am I a pillar of strength? No. I’m crumbling, but no one seems to notice.
Heather, Incredible writing and so moving. What you described put things in a new perspective and my heart goes out to you.
Keep the faith, I know it is difficult to think ahead when mired in so much pain.
Going back to school when you are ready, sounds terrific, something you will handle with great aplomb. I am thinking of you and hope you heal quickly.
You raise a very interesting point. I think we are quick to laud the suffering in such superlative terms. Why do we do it? Perhaps it makes us feel better about how pitifully we’re slogging through relatively insignificant trials. Maybe it just seems nicer and more encouraging than saying, “Gee, that sucks, eh. I know I’d shoot myself.” It’s certainly better than, “You really think you’d have repented by now. Of course, that would mean figuring out which sin brought all this upon your head.” And last but not least, it’s seems so much more encouraging than saying, “Wow, you’re not dead yet? Um, way to go, uh, not being dead.”
Be patient with us, for we are silly. We love you (me, Monica and Sam) and just hope you get better soon. You don’t have to be a pillar of anything for us. Just be Heather, even if you can only be Heather laying on the couch watching a silly movie or TV show.
Oh, Heather. What can I say. I been checking your Blog every day to try and find out how you are. I’m so sorry you’re having such a hard time. I think Tim said it very well. Just be Heather. Lots of hugs from Australia.
Tired of hearing about how inspiring you are? Okay…um…let’s see. You have a charming personality. You are hilarious as you squeal when a Bimmer goes by. Your sense of humor is irreverant and so welcome by those of us with similar tastes in what is funny. You have great taste in MST3K-esque movies which makes it okay to talk during the movie. And just as Tim said, you don’t have to be anything more than the Heather everyone knows. That’s the best part of you. 🙂
It never made any sense to me either. But a larger part of the courage that’s never specifically mentioned is not taking out your trials upon other people or using for as an excuse for failures or personality defects.
Life sucks, but it’s how you deal with its suckiness that shows who you are.
And inside joke: Even when you’re at your worst you’re still accomplish far more than the average person can usually claim to accomplishing in their lives. So don’t sell yourself short.
I don’t know what to say. I am not a useful, calm adult with a useful, calm perspective.
I just want to cry with you, and sit and eat chocolates with you, and talk about boys with you.
I want to be your friend, and not just your distant devotee. Someday, somehow, I hope we can.
I’ve been thinking a lot about your blog since my las posting, and something else occurred to me. People lauding your strength obviously don’t know our family. Not to knock us, but strength is not our claim to fame, modus opperandi or primary idiom. Think about it; we’re Lawvers. We’re smart, and we’re weird.
I say this not to brag, for those of you non-Lawvers out there, but we are a bright bunch. Kevin’s IQ is at or above 150. Steven’s is above that, but we won’t know because he just didn’t want to finish the test. Mom won’t tell me mine, which means it’s really good or really bad, but I could just be the exception to the rule. We figure stuff out. We think around problems; we don’t necesarily power through them with strength.
And we’re weird, which I think is good. Have you seen Steven’s art? Do you not remember that Kevin once portrayed a disembodied head on a cable access show? Have you read “The Heroes Three” (available on memoware.com for iSilo)? How many soft-hearted, mild mannered Colonels do you know? And we can’t forget the Red Hat Society to which our mother belongs.
So, see, you don’t have to be strong. You’re smart and weird. Which means you’ll probably think of some odd and eccentric way to deal with whatever the future holds for you. And it’ll be really smart. And we’ll all totally get it, even if nobody else does. Because we’re Lawvers, and we love you.
No offense intended to any non-Lawvers. And P.S., I think this calls for a family coat of arms. Being the least artistically gifted of the Lawver kids, I’ll defer this, but I still think it should be done.
Tim–I think it is 165. Feel better? And, yes, you are right — Heather will figure a way around it. But, in the meantime I think it is okay to cry about it. Whoever said, “Don’t cry over spilled milk” didn’t lose their last cup of milk. Sometimes a good cry is a good thing. Then, get up, apply those smarts & willpower to conquer the world. Or at least get dressed.
That is very beautiful and moving writing. I wish that you had not been given such a burden.
Compassion has certainly never been my defining characteristic and I have all the emotional depth of a bowl of tulips, so I have no idea what to say or what to cheer you up. Sure I could tell you that many of us care for you and wish you the best, but you surely already know that.
Here is my all too Spockian analysis:
1) Things will improve – things are always worse at the beginning (it takes a while to find the right people/treatment/etc to treat it.) Currently they are working on actively fighting the disease. A maintenance phase will be much less intentsive.
2) There are worse things than college – it is considered by many the best time of their life. I agree with you thoughts about a practical major makes sense. Part of the point of college is to open doors in the future and odd majors may not do that. As a former philosophy major, I know whereof I speak. Similarly work need not be painful.
3) There are many things in this world besides driving. For example you’d be a fine designer (interior or industrial) and designers are the rock stars of the 21st century 🙂 Likewise, you are excellent at writing and have outstanding web design skills. Those are also interesting careers that you would likely enjoy and in which your skillset would make you thrive.
4) In your blog post you wrote about how your days of greatness were over because your body would not cooperate, but I never thought of your body as your biggest strength. I saw your greatest strength and thus your track to greatness first in foremost in you soul – if you are destined for great things it is that vibrant spirit that you have that will be what takes you there – followed along with your keen intellect. Physical strengths are overrated. I can do the hurdles faster than Stephen Jay Gould, can run laps around Linus Torvalds, and am a far better kayaker than Stephen Hawkings, but they have done far more for the world than I.
5) Adversity makes us stronger – ok this is such an LDS cliche that I just made myself sick, but cliche or not, there is truth in those words.
6) You can adapt your schedule to meet your needs. E.g. if college sounds good, but a full class load sounds too intense given your current state – take a partial class load. The world can often be tailored to one’s needs though that fact may not always be advertised.
P.S. As an outside observer who has met a goodly number of Lawvers, I’d agree with Tim’s assesment of them as smart and wierd (though I’d change wierd to “interesting” or “unique”). 150 IQs? Yeash! Heck, I think Max is already smarter than I am.
Hi Heather.
That was very moving. I am sorry you are going through so much pain right now. Remember things have to get dark before they get bright..
I wrote this while I was sick..its kind of like my healthy self taking care of my sick self..if that makes sense…anyway, i thought i would share it with you…
Feel Better,
Krystal
Lost In The Rain…By Krystal
How can you stay
Lost in the rain
You’re so different
Yet so the same
I watch you stumble
And almost fall
Who have you become?
That you have to crawl
With curious wonder
I watch you cry
How’d you lose your wings?
You used to fly
With a sigh
I life you up
Cause I still remember
And I’ve had enough
Don’t worry, I wont let you down
My dear friend
You’ve fallen so far
I wonder where you are
I close your eyes
So you may see what’s next
I carry you off
To a place of rest
You’re all I have to gain
I just can’t stand seeing you
Lost in the rain
Heather,
I read your blog a while ago, and I’ve been thinking hard about what to say. I think I’ve figured it out now.
Your suffering is immense, and many grieve with you. God most of all grieves with you. He does not wish to see you suffer to terribly. But in His sorrow, He will provide you with strength. If you feel like you’re crumbling, God will take some of the weight off you and walk with you in your time of need.
Dercum’s disease has taken away much from you. You’ve lost your strength, dreams, hopes, and maybe even basics such as mobility. But you’ve still got yourself. You still have everything that makes you Heather. Now, in this time and place, you can show us, yourself and God who you are. Like the tea leaf that spreads its flavor as the water is made hotter and hotter, you can give out your love and inspiration as you suffer. You are truly gifted and special. Let all that you are shine, even in this time of hardship.
Well that’s what I can say for now. Our prayers are with you. Be strong, and when you feel your strength going, let all of us, and let God share the load. Please above all, don’t ever go it alone.
Heather,
I read your blog a while ago, and I’ve been thinking hard about what to say. I think I’ve figured it out now.
Your suffering is immense, and many grieve with you. God most of all grieves with you. He does not wish to see you suffer to terribly. But in His sorrow, He will provide you with strength. If you feel like you’re crumbling, God will take some of the weight off you and walk with you in your time of need.
Dercum’s disease has taken away much from you. You’ve lost your strength, dreams, hopes, and maybe even basics such as mobility. But you’ve still got yourself. You still have everything that makes you Heather. Now, in this time and place, you can show us, yourself and God who you are. Like the tea leaf that spreads its flavor as the water is made hotter and hotter, you can give out your love and inspiration as you suffer. You are truly gifted and special. Let all that you are shine, even in this time of hardship.
Well that’s what I can say for now. Our prayers are with you. Be strong, and when you feel your strength going, let all of us, and let God share the load. Please above all, don’t ever go it alone.
I know where you are coming from Heather. I have Cervical cancer. Until I was diagnosed 3 years ago I was perfectly healthy, lived an active life, and had dreams. I underwent surgery but the cancer had spread too far so a regime of chemotherapy and radium therapy was undertaken. After 4 chemo treatments I was admitted to hospital with dangerously low white blood count. After weeks of transfusions it was decided to stop the chemo and increase the radium regime. I developed an inoperable absess, and intolerance to the radium but the treatment still went ahead. At the end, after many hospitalisations, the cancer was gone but I was in a wheelchair. Now I am back on my feet, barely! I have no strength in my legs and the pain is sometimes unbearable. I have to undergo more surgery next year. In my dark hours I cry out for an end to this. I cannot imagine living the rest of my life in this manner. My dreams of travel have ended, I am dependant on others for things that I took for granted and I hate it! I hate my life! But there are others to think of… I can’t let my children see me like this so I pretend that I am happy, that I can’t wait to see my future grandbabies…that I have a life! And do you know what? Sometimes I actually believe it myself! I have changed my dreams of travel to traveling on the internet…I have returned to my love of photography and I have gained a university degree. Basically what I am saying is that there are still goals to be sought…just different than the way I had planned. The pain will always be there but I am stubborn enough to not let it get the better of me!
So Heather, start by pretending and you never know, maybe you will end up believing.