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March 25, 2008



Hey Lisa, to say that it sucks is an understatement. You would think that the "supposed" weal sometimes would come around with something good. Anyway, I don't think that I am / will be the only one that have both D, you and your kids in my thoughts and maybe even a prayer and you know my feelings on that subject!!


Ugh! D just can't catch a break! I can't believe that about the wound dressing! Geez. I'm so sorry. Hope he heals well and rapidly. Thanks for the "tips" though. They make common sense to me, but I know what you mean about mistakes happening every day. I used to date a doctor. Yikes. Scary stuff. And then they have to act like they are SO above making mistakes--like they have magic powers or something.


Thanks--this is actually exactly what I was hoping for. I think for medical people hearing that outrage and fear of the healthcare system and weariness is just as important as the other information.

Lucía Moreno Velo

We all need universal free health care: the same shit your talking about, but for *free*.

Good luck to D!
living in an European country with universal free health care


Delurking to thank you for writing this. It's educated me substantially on this harrowing issue. Sending you all my hopes for a well-coordinated and trauma-free recovery for all o' y'all.

Emmie (Better Make It A Double)

Thank you for sharing this. It is heartbreaking to read, and I know it’s not just a chronicle of the poor treatment one disabled person has received, but also of what is still happening to lots of people, and to your family. I am so sorry. Perhaps the hardest part to read was the part where you had (and have) to actually explain how valuable D’s life is. That is just so unbelievably wrong, and I am aware that I have personally benefited from the flip-side of that type of thinking. My OB, who had been with me for 3 years of infertility, knew well that my pregnancy with twins was a hard-won pregnancy, perhaps my only shot at being a mom. She advocated for my admission to the hospital for treatment weeks before viability and fought to get me treated despite bad odds, even though I now know that many hospitals don’t treat preterm labor before viability, at least not with more than some terbutaline shots, a pat on the shoulder, and a tough talk about odds. I think that despite hospital policies that are supposed to ensure equal treatment, some amount of docs would rather see a pregnancy fail before viability than before near-term, especially if the parents/mom are poor, or of color, or single, or in any way disabled, and despite hospital policies that are supposed to ensure equal treatment. Some of those same docs hand out Clomid like it’s candy without monitoring. I wasn’t aware of my privilege at the time (white, married, middle-class enough to scrape together funds for IVF, non-disabled), but I am now, partly thanks to you, and know that my boys might not be alive were it not for that privilege. I hope to find ways to help make it better, and I work in a hospital-based nonprofit, so I do have some opportunities there, though not of the kind that would have made a situation like D’s a whole lot more bearable or safe. I hope that my “valuable” twins grow up to help make it better too. You write so clearly and persuasively – I hope that someday you can find a larger (perhaps print) audience for your writing about these issues. Also – not sure how movie-watching works or doesn’t work for you, but I’d love to hear what you think of the movie “Sicko”. It really made me realize how things could have been different for us. Love to your family.


Geez. What a freaking ordeal. I am sorry. Thanks for acknowledging that there ARE some awesome healthcare workers out there and I will back you up on the presences of the asshats, too.

Can I get on the insurance company hate train? So many times they will tie the hands of the doctor. TIE HIS/HER HANDS. Who are these people with their business degrees who are saying that this treatment is appropriate or that treatment is not or for this diagnosis you may only be in the hospital for X days?! It is infuriating and the good doctors I work with keep trying and trying even though it's like butting heads against a brick wall.

I have always said that if I was thrown into the healthcare system as a chronic patient, I, as an RN, would have a difficult time negotiating and advocating for myself or my family. It's a giant, f-ing mess and I don't think anyone really knows how to make it better.


Say it, sister!!

That post needs to appear in a mainstream publication. You always write persuasively, but you just really summed it all up, so many issues at once. I was nodding along with you the whole time. I see this stuff every day, from the doctor's side of the table, which of course means I don't have my life or my loved one's life at risk, but I do feel complicit in a really crappy system. Which is why I'm leaving it and heading to a country with universal nationalized health care. I'm just sorry you and D, and others, don't have that option, and I wish politicians in this country would have some guts and work for it.

I'm just glad D has you to advocate for him. It's come to this, that a chronically ill person, no matter how educated and involved in their own care, can't protect themselves - they need to have at least one other person watching out for them, and even then these idiotic mistakes happen.

Laura in L.A.

Oh, Lisa, I am so sorry for what your family has to go through at the hands of the medical system! When you described how you have to tell doctors that D's life is valuable, it brought tears to my eyes. I am praying for his full recovery. I know that the boys can't visit him, but could you put up pictures of D and you and his sons in the hospital room? I want every person who walks in D's room to know that he is part of a loving young family, and his recovery is crucial to that family.

Know that if I were there I would take you to the hospital and watch the kids every day. Sending you love and prayers.

Love, Laura

Will H.

I hope you can join our community "Support People with Disabilities" on

Will H.


This is totally off the subject but if you are in a wheelchair (not permanently), don't go in Olive Garden and ask for a booth. This has freaked them out twice when I asked.



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