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