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

8 comments:

  1. Hi Jennifer, I've been following your blog for the last several months. My friend Suzanne Stewart and I have both been having a hard time with our pain recently. With both of us it can get pretty awful and we use carepages as a way to commiserate. She loves to go to a little coffee shop and relax. I love to take family movies and to film family events. It's kinda strange, but we both are able to drive in a limited way too. Each of us is limited to a few miles before strange things happen to our balance and vision. I've told her we're both fellow chronics. Each of us has found a set of small special activities which help our spirits. Hope you have that in your life.

    And gosh, you needed that celebration after you won that case. Celebration was in order and a pause that refreshes right? Having those comfy and informal celebrations helps me to avoid that deep dark place where life stops mattering much. I think you'd enjoy looking at a couple of my little videos on youtube. They're each only a few minutes long, but fun. Take a look at my channel at: http://www.youtube.com/fechmb0749 I'm pretty sure you'd enjoy the one of Charley cat loving his brushing from Mary and Charley tossing and throwing ping pong balls back at me. I'm FrankLivingFully on carepages.

    Like you've realized long ago, it's a whole different thing to manage being very ill year after year and it takes a whole lot of strength and humor and joy too. Hope your spirits rise and that you realize inside and deeply what a wonderful thing you are doing for all those folks you have helped to get care and receive hope. Try taking it easy for a bit and be kind and forgiving to yourself ok? Frank Elliott

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  2. How're you doing Jennifer? Had you on my mind but I didn't respond--I didn't get that from the original post. Guess I'm not 'in tune' :-). Hope things are more comfortable now.

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  3. Hi Jennifer, I think I understand what you meant. I want relief from what is happening to me all the time. I want to escape the pain and bleeding, the medical insurance that won't pay what I need them to pay, the charities that will help Chrohns patients but not UC patients, from the look on my husbands face when I tell him we need to spend more money on my condition, from feeling like I can't give my daughter things or time because mommy is sick. I still keep going to work each day and putting a smile on my face for my kindergartners. Each time they say I love you Mrs. Fowler or hug me I cherish the moment. I remember that I keep up the fight for Taylor my daughter, Joe my husband and each one of those little ones and yes me. I don't want to leave this world right now but yes I may want to escape sometimes.

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  4. Thank you all for these wonderful comments. They really help. Jennifer

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  5. This is a very well thought out post. I have mixed feelings on physician assisted suicide. I personally think that it opens up a door to bad decisions (a stage III cancer patient, who might survive, but is uninsured...do their doctors rationalize ending their lives?).

    That said, I'm a firm believer that we need to have a frank discussion about end of life issues. We all want there to be a cure. For chronic illnesses, there is no cure. Just treatments that make life more "manageable" (whatever that means, it's a subjective matter).

    And we have to accept that sometimes nothing can be done. Doctors don't want to believe it, especially the high-priced specialists we see. They've never failed at anything in their life, and all too often this leads to big egos. Patients don't want to accept it--we're naturally afraid of death. Family members don't want to accept it--there's a strong possibility that my parents will outlive me, or so the actuarial charts say. When I broach that subject, they tell me to shut up. It's unthinkable and not supposed to happen.

    And so we get "treatments" like feeding tubes in end-stage Alzheimer's patients who sleep 23 hours a day. But family members often dream--we dream as a culture--of a miracle. And without that treatment, the coming miracle that restores the person to full health will not come. So we stick a feeding tube in them, keep them alive for 5 years at the cost of $250,000+ so people can come visit their living, breathing grave on a weekend?

    When you look at the statistics for whether living wills are actually followed or not, I question involving family members in the decision. As long as the person is of clear mind when the decision was made, I believe that piece of paper should govern their care. Sadly, doctors who practiced that way would need to hire a fleet of lawyers.

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  6. Frank, thanks for your comments and the link to your videos. Charlie is adorable and much better at playing catch than my Emily (don't tell her I said that, though). Jennifer

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  7. I'm happy that you enjoyed that Jennifer. I thought you might have an animal with you. Good! They can be such a confirming presence and cats show a great deal of love too in their subtle and purring ways. Just today he got up in my bed around 9:30 and was staring me right in the face. He wanted to play. I've read that the new MS medication Tysabri is being approved for moderate to severe Crohn's Disease too. I thought I should pass that on. The issues with it are way overstated from what I've read. There were only 3 folks with the severe issues and 2 of them may have had the condition already. Don't let that scare you. It's a monoclonal antibody as Xolair is. Xolair's saved my life. Here's a link from Googling tysabri crohn's and limiting it to the last month with the advanced search: (hope u can live in the present a lot and meditate some to get a relaxation response for yourself)
    http://www.healthfinder.gov/news/newsstory.aspx?docid=611729

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  8. hi
    today i found out i may only live for another 5 or 7 yrs maybe... i have chronic pulmonary brocha asthma diease... that is irr-reveresable, i have only 58 % lung capaicity and today i learn if the med i am on if it doesn't start helping me w/in the next 3 to 6 months my only opition is a trachomony, my choice is not to have a trach.... i am on cpap for severe sleep apena along with the other medical problems.. i was born & my parents told them to take me home to die, i have lived 48 yrs to much of the surprises of doctors, but today my life has changed for-ever, i talked to my mom whom is 81 yrs old & explained it all and my wishes , she understands coz i was born this way and she knows i won't to be buried by her & daddy... no i am not thinking of ending my own life but i have made my wishes known to my family & spouse, i do not want to live on life support nor any other device that will pro-long life, first of all can't afford it and i don't want my family to have the burden of all those medical bills that we can't hardly pay now... i am a believer that if ones wishes are not to pro-long thier life than that should be respected if the outcome is to a point there is no cure & like mine not reversable...
    i was a miracle baby, but i know my time is limited here on earth & i accept that & that when the good lord is ready no matter what medical techonogy says or does , the good lord will take us home ....

    sweetie
    arkansas

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