thinking about jake seliger
In one of my posts, I was talking about how important it is to not only share diagnoses and then hide the reality of life, but also share how you're living with illness, what it took to get there and how you navigate finding the appropriate care in the medical maze. One such remarkable case of documenting his journey about his illness is Jake Seliger.
I first came across Jake Seliger on Hacker News last year. His blog posts have been shared there and he has been showing up in the comments as well. He and also his wife Bess Stillman have been very thorough, candid and vulnerable in sharing their journey since finding out he has squamous cell carcinoma. They are both very, very skilled writers and how they have managed to put it all into words has made me cry multiple times.
It has been truly special and valuable to see such an intimate look into someone's life who is fighting cancer. The ups and downs, the difficulties in getting medication or getting into clinical trials or even finding out about treatment options. The earnest look into the medical system that is suffering from too much bureaucracy, at times arbitrary rules, miscommunications and not doing enough to reach out to patients. The way families are burdened with endless research because they cannot necessarily rely on their primary point of care to know about new protocols, procedures, drugs or new clinical trials.
Now Jake's life is coming to an end.
I'm very thankful to both of them for being so raw and public with it all, documenting the difficulties as well as the good times. It really reminds you what really matters and that you should not take things for granted. Find the beauty in it all, spend time with loved ones, do as much as possible of the things you enjoy. As a chronically ill person, it also reminds me to keep pushing forward and fight, even in really difficult weeks. Despite obviously not being nearly as sick as Jake, reading his posts mirrored a lot of my own experiences in healthcare, the questions you ask yourself while chronically ill and hopeless, and how others treat you while you're sick. For me, it validated all the hope, the anger, the cynicism, numbness and humor to cope with it all.
Here are some of their blog posts I find the most notable:
- Jake's "I am dying of squamous cell carcinoma and the treatments that might save me are just out of reach"
- Bess' "What's it like being married to a dying man?"
- Jake's "Uncomfortable truth: How close is “positivity culture” to delusion and denial? about empty platitudes and missing the acknowledgement from others that something is bad or you're suffering while ill.
- Bess' "It Only Takes 200 Joules To Restart A Heart"
- Jake's "Life, swallowing, tasting, and speaking after a total glossectomy" about his daily life after losing his tongue.
- Bess' documentation of their clinical trial difficulties, Part 1, more parts linked inside.
- Jake's companion piece to Bess' clinical trial posts.
- Bess' "Phone Calls to Tongueless Men", a great article on accessibility issues in healthcare and the limited understanding and flexibility by people in general when you are disabled.
- Jake's "The more things go wrong, the more things going wrong" about illness being isolating, missed connections, worse symptoms when you have no support network.
- Jake's "Who cares about your healthcare? What’s commonly overlooked in the “health” care system" about how easy it is to become or stay seriously ill or even die while accessing healthcare due to mistakes, lack of knowledge and issues in communication.
- Jake's "Will things get better? Suicide and the possibility of waiting to find out" about suicidal ideation while suffering, "what if it doesn't get better anymore?", feeling uncomfortable in your body no matter what, the falsehood of inspiration porn and how suffering does not make you a better person.
- Jake's "The financial costs of healthcare costs, or, is keeping me alive worth it?"; a piece dear to me because I also had to grapple with the thought that my future treatments (biologics) are very costly and whether I am worth it or burdening society.
- Bess' latest post at this time about Jake's decision to not pursue further treatment.
- Jake's last post "Starting hospice. The end."
I really recommend to read all of their posts to get the full story on all the treatments and experiences, though.
I wish Jake, Bess and Athena comfort and all the support they can get.