Monday, December 29, 2008

Paryers, Thoughts, Good Wishes Needed

Lindsey is 12 or 13 years old now, I think. I've known her for so many years, been a support for her mom and a penpal to Lindsey off and on for maybe 8 years now -- can it be that long? Heck -- she may be 15 by now.

But the question is whether she will reach her next birthday. She is on heart-lung bypass. They don't know if she will make it.

My brother and his family are in Israel. He says they're safe. I wish they'd come home. I read every article, watch every newscast, with a lump in my throat.

If there's a god or goddess or anything or anybody up there, now would be a good time to step in, ya know? Jennifer

Sunday, December 28, 2008

Sad Days

I just got an email telling me that one of our clients passed away. A friend of hers came to us some months ago and asked us to help see if we could find any other treatment options for a stage four cervical cancer patient on Medicaid. We researched clinical trials all over the world, sent several prospects to the patient's doctor, and supposedly he checked them out and found that none was the right fit.

This comes at a time of year in which I feel great sadness at the anniversary of the loss of my friend David, and, in mid-January, my mom.

David was a remarkable person. Once, when we were together, he saw a blue heron and was so excited about the miracles of nature that it was contagious and completely caught my attention. Now, when I see a blue heron, I know David has come for a visit. Always when I need him. Then again, I suppose I always need him. Nobody has ever made me felt more completely accepted than David. What a wonderful feeling that was.

His wife told me that David used to throw change on the ground because, when he was a child, it used to mean so much to him to find a penny on the ground. Now, when I see a penny on the ground, I leave it for a child to find.

My mom died three years ago, although it seems like yesterday. She'd told us all along that she didn't want to be drugged up on pain meds. She had her first shot of morphine one night and died the following morning. She had been afraid of losing her bowels when she died, of messing up my dad's bed, of the pain, of the well-meaning people who would encircle her. She avoided all of that. She just stopped breathing. My dad left the room for no more than 15 minutes, and when he went back, she was gone.

My mom's absence in my life remains gut-wrenching. She forbade us from having a funeral or memorial, from sitting shiva (as we Jews do). So my brother and I took a day off and then went back to work. Bad idea. Grieving with others serves an important purpose in helping us to move on.

Our patient was a lovely woman named Nancy. I spoke with her a couple of times, but she was too sick from chemo to talk on a regular basis. So we dealt with her doctors. When we found a trial that looked like it might fit her -- so many of them required no previous chemo, and others were in China and other places around the globe -- we faxed the information to her doctors so that they could follow up by sending lab results and x-rays and whatever else the trial coordinators wanted. Nancy is not the first patient I've lost, but it nags at me -- could I, should I, have done something more, something different?

Death is complicated for me. I see it as my way out, as my light at the end of the tunnel I am living in. When it comes, it will be welcome. But I am so sad for Nancy, who would have done anything to stay alive -- she was willing to do and try absolutely anything. And I miss David and, even more, my mom. Death may be a gift to the sick, but it is not a gift to those who love them. Then again, knowing that my mom died exactly as she'd wanted helped me accept that, since this was her wish, I could not begrudge it to her by placing my own wishes first. But I miss her, still.

Maybe she has met David. They were both flirts, so perhaps they found each other, if there is a heaven. And maybe the two of them will help Nancy find her way.

And then again, maybe there is nothing after this life and they are just gone. Strange, how okay that would be for me, but how unacceptable that is for the people I love and care about.

My mom's death came before her suffering became unbearable to feel or to see. David was very sick but unaware, at the end. He died in California, so I was not with him. His wife's long email the next day broke my heart, but it was as it had to be. Today's email about Nancy makes me sad mostly because I know how badly she wanted to keep going, fighting, searching for answers. Sadly, I don't think she found any rest, any quiet, any peace in death.

I lost two dear friends in 2008 -- deaths I cannot understand. I've written about Iris; maybe you remember. She had a loving husband, son, daughter-in-law, and literally hundreds of friends who called her Mom. And Ruth -- I don't understand a god that takes a hero, a ground-breaking women's rights lawyer with two young children and a wonderful husband, and leaves me. It should have been me, not Ruth.

Some people say death brings closure. For me, it brings questions. It takes who it wants to, not those who want to be taken. It takes those who have not lived their lives, and leaves those who feel like their lives have been well lived and are ready to go. It takes a mom, a dad, a husband, a friend. This is all very confusing to me. I don't believe in god, but I do feel in my gut that death has some choice about who to take, and I am mad as hell at its randomness, although the fact that it is random may in and of itself be proof that it is no more of a real, thinking "being" than god.

I am not going to figure out this big philosophical dilemma today. Today, I will mourn Nancy. Tomorrow, David. Two weeks from now -- really, every day -- I will mourn my mom, as I mourn Ruth and Iris. And wonder why. Jennifer

Tuesday, December 23, 2008

New Year Wishes

My wishes for the New Year are modest. I'm not wishing for world peace or an end to climate change, although these would be great things. But I want to be somewhat realistic.

My first wish has to be selfish: I wish I were no longer sick and could really do all the things I would like to do in life.

My second wish is semi-selfish: I wish my friends weren't sick or in pain, either.

My third and fourth wishes (in either order) are the meat of it. I wish everybody at an insurance company who denies claims for a living would get really, really sick, and everybody who works as a debt collector would get really, really broke. Not forever -- 6 months or so will do. Just long enough so they know how it feels.

Today, I got a call from Sallie Mae attempting to collect a student loan debt from a man with an inoperable brain tumor. We've already submitted enough medical information so they should have discharged the loan -- I don't know why they didn't. But when I told the collector that he is dying and has maybe 6 months to live, she didn't skip a beat -- she just kept saying she needs $267.68 this month in order to offer him the extended payment option. I just told the woman he's dying and she's talking about an EXTENDED payment option. Does this make any sense to anybody? Two days before Christmas. I guess she already has her gifts all wrapped pretty and under the tree, waiting for Santa Claus. I hope he brings her a lump of coal.

I don't mean to sound as nasty as these people are. But when an insurer denies coverage of a medication for a 14 month old baby with inflammatory bowel disease who's tried everything else, it makes me want to look the decisionmaker in the eye and ask "how could you?" A 33 year old woman with transverse myelitis needs a certain medication -- she's already tried the other two options and they didn't work -- but the insurance company denied coverage. How can it be? Transverse myelitis will paralyze her, and the longer you go without treatment, the less chance there is that the treatment will reverse the symptoms. What horrible person at an insurance company can deny coverage in a situation like this?

Yes, it's true that I see the worst of it. But I'm a patient, too. This year, I fought with my insurance company about how much they were going to pay my gastroenterologist for my endoscopies, and whether they were going to continue to pay for my Protonix, which is one of the meds that is keeping my gastroparesis in check -- which means I need it to live. So I know this happens to everyone. Or at least everyone who has insurance. But how do these people live with themselves?

I suppose they think it's a job like any other job. And I suppose if they never denied a claim or tried to collect a debt, they would lose that job, and there would be yet another person in trouble. I sort of get that. But someone has to be accountable. And really, if it were the last job on earth, would I actually be able to do that job? I don't know. I'd like to think I'd rather go hungry, but if those were my choices, would I have the strength of my convictions and turn down a job that results in misery for others?

Thankfully, I don't have to make that decision.

I remember when I was a lawyer for the state and I got assigned to defend a challenge to the first round of "welfare reform." It was a huge case -- my first really big case at the Attorney General's Office. I struggled over it. Should I ask to be removed from the case because I disagreed so strongly with the state's actions? My friend John Brittain said no, that I should hold onto the case because, even though I would be making arguments that could hurt people, I could do it with more tact and judgment and heart than other people in the Office. And so I argued that this was a legislative judgment rather than a judicial one -- never once arguing that it was a good idea to cut welfare. When you compare my briefs in this case to the briefs filed on behalf of the state in our big school desegregation case, in which the lawyers really did try to defend the state's provision of inferior educational opportunities to minority children, you can see the difference. Or at least that's what I tell myself.

I also know that I had such a hard time defending the state in individual cases in which we were denying Medicaid, for example, that it didn't take long before my supervisors realized that I really ought to be a plaintiff's lawyer because I'm lousy at defending decisions with which I disagree -- and I ended up settling all of my cases as a result.

I don't believe I could deny a 14 month old baby the medicine he needs, especially if he'd tried everything else. The insurer is arguing that this medication is not FDA approved for inflammatory bowel disease, but that ignores the fact that there are only two drugs that are FDA approved for IBD in children, and NONE for which there has been adequate evaluation of children of such a young age.

And I don't believe I could deny medication for a 33 year old woman who wakes up with new limitations every day, again, especially if she's tried everything else.

And I know that, if I were making a collection call, and the person on the other end of the phone told me that the debtor was dying of an inoperable brain tumor, I would apologize for bothering him and wish him the best of luck. Job or no job. I just know that I could not pretend not to have heard this.

So yeah, wishes three and four are on my list. Maybe, if the people who make these decisions had to suffer themselves for even a little time, they would find a little more charity in their hearts for others. Jennifer

Friday, December 19, 2008

Book Review: Dating Jesus

I have to start with a disclosure. This book has nothing (at least nothing obvious) to do with healthcare. But its author, Susan Campbell, is a columnist and reporter for the Hartford Courant and someone I am proud to call my friend. I waited for months for this book to arrive after pre-ordering it from I wasn't sure what to expect; I knew Susan was raised a fundamendalist Christian, and I knew that she no longer practices that particular brand of religion, so I knew the book would trace that movement in Susan's spiritual life. What I didn't know -- and, frankly, didn't expect -- was how incredibly powerful and universal her message is.

Dating Jesus is, in fact, about Susan's spiritual odyssey, but it's also a lot more. First, I knew very little about fundamendalism and how it differs from other Christian sects before reading this book. It turns out that the fundamentalism of Susan's childhood believes in a very literal interpretation of scripture -- it's sparse and spare and very technical. There was no dancing, no acknowledgement of sex, no indulgence, all of which can be hard for a kid who sees other kids living with looser rules. Early on, Susan embraced the structure in her life. She devoted herself to loving Jesus and trying to help others come to love him. She taught Sunday school as soon as she was allowed. She "knocked doors" (not knocked ON doors) to try to educate the unenlightened. And she didn't mind having a good excuse to avoid the fear of communion with the other gender in ways other than playing sports.

But also early on, Susan noticed that there were limits to what she was allowed to do within the church because she was a girl. By about 9 years old, she had started asking questions. This fascinates me because that's about when I started asking the same questions, and for me, it had nothing to do with being a fundamentalist. I'm Jewish, and was raised in the reform tradition, which has very loose rules. But I was required to go to Sunday school and Hebrew school, just like my brother. Although I had no intention of being bat mitzvah'd, my parents insisted that I attend these classes. I remember one big fight I had with my Sunday school teacher about the role of women and my belief that a just and benevolent god would treat all people as equals. And I remember that, when I hit age 13, I insisted that I no longer be required to attend these classes -- if I were a boy, I'd be bar mitzvah'd at that age and would then not have to keep going to class, so why should I have to go any longer than my brother would?

Is there something inbred in some of us that makes us question inequality? Susan in the Missouri Ozarks and me in overprivileged Long Island, New York; Susan a fundamentalist and me a Jew; Susan a tomboy and athlete, and me a guitar-playing hippie wannabe -- we couldn't have been raised more differently. Yet, something awakened in us both at roughly the same age. Susan has hit on something universal here that was both surprising and comforting to me.

But Dating Jesus isn't just about Susan's awakening as a feminist. It is full of insight into scripture, most of which is foreign to me since the scripture I know a little about is Old Testament, and Susan's goes way beyond the Old and New Testaments to secondary tracts. It's also full of insight into the role of women in religious life, and the way in which women's rebellion against second-class status in the religious context is intertwined with the feminist movement as a whole historically, beginning before the suffragettes. I've read lots of books about the women's movement, but I've never focused on the involvement the early feminists had in religious life. So I'm fascinated and enthralled with Susan's historical account. Familiar names like Elizabeth Cady Stanton in a different context than that on which I've focused in the past.

Although Susan's book taught me a lot of historical and religious information that I did not know previously, in the end, what moved me most is her personal journey. There is an incredibly funny passage in which Susan prepares to give a talk from the pulpit of a Congregational church, having been invited because of her Hartford Courant columns about religion and equality. Having left her church, Susan never wanted or expected to be delivering a sort of sermon from any church, even a more tolerant New England variety. She -- who is a very experienced and comfortable public speaker -- was scared to death of standing at the pulpit -- so afraid that she avoided responding to the invitation for several days, and then arrived two hours in advance, and cried at the song the choir sang before she got up to speak. This part of the book is laugh-out-loud funny, mostly because Susan is a very talented humorist and tells the story for laughs.

But the book packs a real whollop at the end, as Susan realizes what the fundamentalists got wrong in her view. A trip to Haiti, where Susan sees the poorest of the poor, the sickest of the sick, helps her to realize that the Jesus she really loves is the one who treated women as equals, who ministered to the poor and the sick, whose Christianity is about eliminating poverty, embracing lesbians and gays and all who are in any way different -- about love and forgiveness. And so it is that Susan realizes that she was simply dating the wrong Jesus. As I read the passage of the book where Susan makes this realization, I found myself crying along with her. Indeed, writing this now chokes me up. Susan is a deeply committed spiritualist who doesn't pick her fights carefully -- she fights them all -- and who loves Jesus's message of love, even though she no longer loves the church she grew up in.

I don't know if I would have been called to read this book if I didn't know Susan. But what is so exceptional about the book has nothing to do with knowing Susan. I don't remember the last time any book made me laugh out loud, or made me cry -- and I certainly don't remember the last book that made me do both. Susan blends her own story with so much information and knowledge that impresses me to no end. The balance and intertwining of the personal and the political -- an intermingling that, for me, IS feminism -- is pulled off with exceptional skill.

You don't need to know Susan to love this book, but reading the book will make you love Susan. It is intensely, unwaveringly honest and real and exceptionally smart. It's a must read.

And really, the "right" Jesus's message IS about our healthcare mess, as it is about all inequality. So although the book is not about healthcare, it's really about everything that matters, including healthcare.

Buy it. Read it. Thank me. Jennifer

Thursday, December 18, 2008

Advocacy for Patients with Chronic Illness

Yesterday, someone emailed me to tell me that they were listing this blog as a resource for patients with Crohn's disease -- but they didn't list Advocacy for Patients with Chronic Illness itself as a resource. Since I suspect the work we do is a far greater resource than anything I write on this blog, and since I haven't talked much about what we do since moving this blog to this location, I thought I would introduce us.

I founded Advocacy for Patients when I was too sick to leave the house, and I realized that my days as a traveling trial lawyer were over. I went onto to the internet to look for resources and ideas for myself, and what I found was a community of patients who were desperate for information. I started answering questions about health and disability insurance, Social Security disability, the Americans with Disabilities Act as applied to work and school -- a whole host of issues confronting the chronically ill. Once I realized I was answering the same questions over and over again, I wrote the first edition of what is now our Know Your Rights Handbook, which is now in its fourth edition.

Then someone I know was denied long-term disability and asked me if I would appeal for them. Then someone else was denied disability retirement. Slowly but surely, I had a new job. Then, of course, came the realization that I would need to be paid some day and I couldn't charge these patients, so I incorporated us and went through the process to get a tax exemption so that we could apply for grants and accept tax deductible donations.

Fundraising has been a far greater challenge than I thought it would be. How many senior attorneys give up a partnership in a law firm to provide free services to sick people, occasionally even saving a life? It turns out that, as a general rule, large funders don't want to fund an organization that reaches only 1000 patients a year. To me, 1000 patients a year sounds like a lot, but that's because I place great value on the cases we do that take 50 hours and span a period of months, whereas larger funders are prepared to fund less intensive work that reaches more people. So we are almost entirely dependent on donations, along with some small grants from the Connecticut Health Foundation, the Universal Healthcare Foundation of Connecticut, and Get Your Guts In Gear.

But the funding that put us over the top and allowed me to stop doing paying legal work on the side came from Mike McCready, lead guitarist of Pearl Jam, and his wife Ashley O'Connor. Mike has Crohn's disease, as do I. We met through Gloria Steinem, believe it or not -- Ashley mentioned that Mike has Crohn's and Gloria pointed them in my direction, as she is wont to do, being the world's best networker ever. While I was struggling to get Advocacy for Patients off the ground, Pearl Jam played Hartford, Connecticut (where we are located), and donated $1 per every ticket sold to Advocacy for Patients. Mike and Ashley founded Advocacy for Patients every bit as much as I did, and they continue to be great supporters, and have become treasured friends.

This March, we will celebrate our fourth anniversary. It's hard to believe that it's been that long. We now have a very hardworking Board of Directors, and we do a lot of work with the Crohn's & Colitis Foundation of America, the United Ostomy Associations of America, the National MS Society, and other specific disease organizations.

Now, we help a lot of people find health insurance despite pre-existing conditions, and we do health and disability insurance appeals. We answer questions about Social Security disability and help people strategize. We assist patients to enforce their rights under the Americans with Disabilities Act, the Family & Medical Leave Act, Section 504 of the Rehabilitation Act, and other state and federal laws that help people with chronic illnesses obtain reasonable accommodations in work and school. And we constantly help people find resources despite a shrinking safety net.

In addition, as seems only natural, we do some public policy work. How could I listen to tragic stories day in and day out and not be involved in discussions of healthcare reform and, in particular, chronic illness management? This is especially true when I hear talk about managing patients as opposed to managing diseases, and I know we don't need to be managed. The whole notion that we want more health care than we need is absolutely nuts. As a chronically ill person myself, let me assure you that, if I could go a year without seeing any doctors other than my brother, I would be very happy, indeed! When we fight with a health insurer for coverage of a treatment, it's because we need it, not because we want it. And somebody needs to be saying that. It seems that somebody is me.

So that's the scoop on Advocacy for Patients. If you are reading this and have a few bucks to spare, we'd greatly appreciate tax deductible donations. If you are reading this and need our help, we're easy to find -- you can email me at And if you're feeling alone, don't. We're here and it looks like we're not going anywhere, so you never have to feel alone again. Jennifer

Friday, December 12, 2008

Friday Tired

I wrote a book called Friday Tired. I had the title before I had anything else. I'm so tired that I feel like it's Friday on Monday morning, so by Friday, I'm beyond any kind of tired I can describe. Still, I work 15 hour days and write this blog and do as much systemic advocacy to change the health care system as I can. People say I do so much, and compliment me, as if I had a choice. But it's not so much a choice as it is a necessity.

In a strange way, work is transgressive for me. It helps me to surmount my fatigue by giving me a reason, by getting my juices flowing. When a patient needs me, the energy is just there somehow. Sitting around doing nothing, I can't move. But when the phone rings and a mom is in tears because her child is sick and she's afraid, somehow the energy comes to me. It's never a battle when there's a cause; it's only a battle when I have time on my hands. And then, the fatigue makes it too hard to have any fun.

Somehow, I have to find a way to get it through my thick skull that fun is as important as work. Sure, helping people with horrible health-related problems is critical. Often, their needs are urgent and severe. But too much of the time, I wonder who will take care of me -- and the only answer to that question is and must be ME.

If I use my down time to go out with friends or shop or see a movie, then, I worry, I will not have the energy to work. But if work can be transgressive in giving me the energy to surmount my fatigue, why can't pleasure be the same?

This is very old and part of my family dynamic. Mom was flighty and irresponsible. Dad was responsible, and showed that by working all the time, including at home, with his drafting materials strewn about the dining room table. Early on, I decided to emulate my Dad in this respect. Indeed, I sort of had to; I had to help take care of my Mom from the time I was very young, when she would take to her bed with a migraine, or simply need to be entertained. I could not BE Mom and take care of Mom, so that left Dad as my role model.

Maybe it's time to be less afraid of being like my Mom. It's not as though I'm all of a sudden going to become irresponsible and flighty. But one thing she had right and my Dad had wrong: work is not everything. I should have fun once in awhile.

I think I am going to work on making fun as transgressive of my fatigue as work is. Except if I work too hard on it, it sort of defeats the purpose.

Shedding one's innate habits is difficult. But I'm going to keep trying. Jennifer

Wednesday, December 3, 2008

Life Death Fear Choice

Anybody who was really quick saw a different version of yesterday's post that was up for about 10 minutes before my Dad reacted and I agreed that it was too raw. I said more about what I plan to do when I am unable to keep any food and liquid down than I should have said out loud, ever. While I don't believe that Joni Mitchell's song River has anything to do with committing suicide, I respect that my father, and later my brother and sister-in-law, thought I was threatening suicide. I was not. I am not. I AM NOT SUICIDAL.

So I want to clarify, but I also want to talk about this with you. I get a lot of calls and emails from a lot of very sick people. At least once a week, someone says something to the effect of "I might as well pack it in," or "it's just not worth it any more." Indeed, more often, I talk to people who are taking heroic measures and putting themselves through a hell that I don't understand except that most of them have children and/or spouses, and I do think that changes things. But when a patient says something to me that I think sounds suicidal, I stop the discussion and ask them if they're serious. They have to convince me that they're not or I would feel compelled to act. Once, I called the police on a patient who emailed me a suicide note and then refused to answer the phone or email.

But what I understand -- and what every sick person who read my blog yesterday understands -- is that sometimes life is so hard and so painful that you need to know there's light at the end of the tunnel. It's not about suicide; it's about escape, relief, a way out. You just can't be this sick and walk around cheerful all the time, looking forward to yet another day of hell. And it is the case that every single day of my life is hell in some respect or another -- I am bleeding rectally, I go to the bathroom 15 times, I throw up, I have constant, unremitting abdominal pain, I am worn out, I can't sleep, I can't feel my fingers and toes, I have scars and blotches all over and cuts on my hands, and my hands and knees hurt unbearably. Every single f-ing day of my life. No exceptions. It is hell and then some. Thinking about the hell ending is not the same as thinking about suicide; it is thinking about relief.

So yes, I think of dying as my eventual relief. But am I suicidal? ABSOLUTELY NOT. I hope that was loud and clear enough. I AM NOT SUICIDAL. I am not even depressed. I'm terrified of what happens when I can't control the vomiting. I don't want that day to come any time soon, I swear. My friend Ellen vomits 30 times a day. If and when my turn comes to have that sort of life, I will not have energy to work. I may well lose my house and what little money I've saved for retirement (as if there's ever going to be retirement -- with this economy, I will never be able to afford it). I will lose my health insurance eventually -- even if I get Social Security disability, I will have to wait 2 years for Medicare, and in the meantime, I won't have $800 per month to pay for my health insurance premium. I will be like the people who call me for whom I have no answers. There is no relief, no solace in that kind of life. I can't bear to even think about it for very long, and every person I talk to who is in that place scares me to death. That will be me some day. It's not if; it's when. Gastroparesis will progress. And until you -- my father, my brother -- stand in my shoes, don't tell me that my craving for even a moment of relief is somehow wrong or worse, crazy. Until you feel pain in every single inch of your body all day every day, so badly that you can't sleep no matter how exhausted you are -- until you get what it's like to be this sick -- don't you dare judge me.

I do not advocate suicide, but I sure as hell advocate choice. I believe in the right to die. When my doctors agree that there is nowhere else to go, when everybody around me can see that I am literally starving to death because I'm vomiting and having diarrhea, when it's time to make the decision of whether to get a feeding tube, I should have the right to end my battle. I should have the support of family, friends, medical professionals. The law should give me that right. It doesn't right now, but it should. But ONLY when my physicians agree that there's nothing more to be done. ONLY when I have no life left to live. NOT NOW, NOT ANY TIME SOON.

So if my father and my brother were upset at yesterday's post, why am I writing about this again, at the risk of upsetting them again? When I started this blog, I committed to a level of honesty and candor about what it's like to have a chronic illness. I committed to having no secrets. What good is this to other patients if I pull my punches and pretend that I never ruminate on whether there's some way out? I don't know anybody who's as sick as I am every single day of her life who never wants it to end. We don't really want to stop living; we want to stop the pain. We aren't threatening or contemplating suicide; we are just begging for some relief. And if I don't talk about this aspect of chronic illness, then I am breaking my pledge about this blog and what it is and what I mean it to be.

I am not trying to inflame the family discord that resulted from yesterday's post. I have reached out to my brother, admitted that he and my father were right about my initial post, and tried to explain what I just said above. But if they -- along with my sister-in-law -- read that post the way they did, then I have to worry that someone else did, too. And I have to clarify because I feel a responsibility to say I AM NOT ADVOCATING SUICIDE. I AM NOT SUICIDAL. I am advocating a change in the law that will let me die with dignity when my time comes. I am advocating a situation in which, when my doctors and family agree that the time has come, I can safely and comfortably die. I am advocating for the same respect for my choices as I believe a woman should have when deciding whether or not to bear a child, or to have sex at all (rather than being raped).

Life is worth living as long as I am able to make it so. I do good work. I can't help everybody who comes to me, but I can help some of them. I try hard. I give all of myself. As long as I am able to make something good come of my suffering, I will. But when I no longer can do that, I hope that the law and everyone around me will respect my decision to alleviate my suffering in the only way that will be available to me at that time. This is not about suicide. It's not even about dying. For me, in the end, this is entirely about choice. Jennifer

Tuesday, December 2, 2008


I'm in a Joni Mitchell kind of mood today. Well, for several days. First came Thanksgiving. Astounding. At one point, I realized nobody was listening to me, so I said out loud "I wonder how long I can keep on talking before anybody realizes I'm talking to myself," and nobody did. My brother got me all 3 seasons of Arrested Development for Chanukah. Um, no. If you knew me at or, or thought of what I might want, you could never make a blunder like that.

The rest of the week-end was quiet, but too short. I slept a lot, but that means I lost a lot of time. I'm so exhausted -- Friday Tired, like my book title -- that a three day week-end just isn't enough.

Then came yesterday. I won a disability appeal I've been working on for months. It was a very, very stressful appeal because I've gotten to know and care about the patient, and I really thought there was a chance we'd lose. But we won. Haven't heard from the patient, but her husband's first reaction was to thank the doctors -- oops -- and me, of course. No, there is no of course. He was very gracious later, but the celebration that should have happened didn't.

And then I got a letter from my insurance company. They're no longer covering one of the two meds that keeps my gastroparesis in check. If I lose this med, I start vomiting, there may be no way to keep fluids in me, and without food or fluid, you die. That's when they will ask me to accept a feeding tube and I will decline. I know too much and have seen too much to put myself through that.

I called a lawyer I know who works for my insurance company and he's looking into it. I called the guy I hired to replace me at the Attorney General's office. He'll weigh in if we don't have an answer by this afternoon. I found a lot of Canadian websites where this drug is somewhat less expensive, but not cheap enough to afford on an ongoing basis. So here it is, this week's crisis. And I did nothing but sit here minding my own business, paying $800 a month for my health insurance, and doing my best to help other people solve their health-related problems.

Still, I can't get Joni Mitchell out of my head. Quoting:

It's comin' on Christmas.
They're cuttin' down trees.
They're putting up raindeer
And singin' songs of joy and peace.
I wish I had a river I could skate away on.

That's where I'm at. I "wish I had a river I could skate away on." I don't want to die -- I just want to hide. I want me and Emily and my house. I don't want to talk to anybody. I don't have anything left to give. I just want to skate away and not be noticed. Not die -- just escape to a place where the pain stops, and never stop to look back. Jennifer