This week is quite complex.
I’ve been trying to make time to do the things I need, journal, yoga, grade, photograph, relax, but having other things on your mind and also a massive responsibility list makes it feel impossible, endless and exhausting to do what you need to.
Sunday morning I graded and decided to take an hour to do nothing [therapists orders, lol]. I started watching some borderline junk TV to cash out my mind for a little bit – however at 1135 I got a text in the middle of it saying that my cousin had passed. If you are unfamiliar with the story, let me give you a very summed up version of a very complex situation that engulfs every ounce of rage and frustration within my being. Last March my cousin got a tumor worked on [I say worked on because it was supposed to be removed but it wasn’t fully removed] within his brain. The thalamus, to be exact, which is in the center of the brain. My family and I [cousins, aunts, uncles] grew up extremely close. Every day in the summer we would be together, we would have cousin sleep-overs at my grandmother and grandfathers house, and we were all inseparable. Time may have moved us to different locations but our hearts still remained within pretty close quarters. So when I say my cousin had brain surgery, it’s more like a brother that I am talking about.
The brain surgery didn’t go as planned, and adding a layer of COVID means nobody knew what was going on. My family didn’t get to speak or see Jason as he was recovering and he had no one to advocate for him. Messages were inconsistent to his recovery. He was coherent, then in a coma, then fine, and then all of a sudden going to Mary Free Bed for therapy. A very long story made short: When he got to Mary Free Bed it was the worst they have ever received a patient. J was septic, unresponsive, and basically brain dead. They told us that he should have never been transferred to a hospital in his condition, and they then transferred him to Mercy Health. The hospital that transferred him – I would bash and dog on a LOT right now, but it isn’t my place and I will keep that information private for the moment – however – this hospital still hasn’t disclosed much information and there is most likely a lawsuit that needs to be filed for this entire month of poor care they gave to our family member. After Jason was examined at Mercy, they basically said there wasn’t any thing to be done and he was sent home to Hospice.
For almost 30 days J wasn’t really given food or water, since he was on hospice care. His body was strong, his will to live was even stronger, and he was very unaware of what was going on. My family began to play music for him, sing to him, talk to him, and over time his brain began to unswell from the surgery. He all of a sudden was very cognitive and very hungry, and began to have the ability to swallow and talk again. Over the next course of months he would be transferred back to Mary Free Bed, make monumental movements, began to relearn how to eat, drink, walk, function again. However the problem was the shell of the tumor, that had turned cancerous, still existed and still was growing at a rapid pace. J made mountains of movements. Everytime I would see him he would speak with more emotion, more inflection, more heart. The pace of growth was unbelievable, yet, so was his tumor. In November his recent MRI scan had shown the growth of that tumor once again taking over. He went under radiation and Chemo – and went to hell and back for the second time. At the end of November it seems his body really was weakened, his tumor was strong, and the outcome had returned to the devastating result of the first time around. After this last update, I hadn’t heard much from my aunt and uncle – they are pretty private people – and nothing else that really could be said, needed to be said.
The growth of this tumor began [Im assuming] to press on his brain stem as well – so the ability to eat, drink, talk began to be limited – and the chemo and radiation did weaken his body quite a bit. So in discussion of where we were last May in hospice- his body wasn’t comparatively as strong as it was the first time going into hospice as it was this time. My uncle also said when moving him into a hospital bed that J looked depressed. There is something to be said about someone’s will to live. I’m assuming once this move happened, J accepted this terrible end result and allowed himself to relax and let go. So that’s the long story short.
There are many things I could say, out of anger, out of frustration. There are a lot of thoughts I have that could be dangerous in discussion of preventative care – different care – but, it’s all unhelpful at the moment. But more importantly this has taught my family up close and person, why national healthcare is necessary. Here are some small facts:
- Coming out of hospice the first time, since hospice is defined as a one way road with no recovery, to get an ambulance to pick him up and take him to the hospital since he was WAKING UP, it was 5000 dollars out of pocket for a non-hospital related EMT to take him to the hospital. The hospital would not come and get him due to him being in hospice. I question all of the families that had to end up taking a body there themselves or let someone die because they didn’t have five grand laying around.
- Hospice is in most cases, super fucking unethical in regards to the person dying. In this country we do not have assisted suicide. The idea its more ethical to let someone starve to death and die, because religion runs our country and ‘God must take them when they are ready’ has to be the most unethical, arbitrary thing I have ever heard of. I am glad that the second time in hospice was quicker for my cousins sake so he didn’t feel every hunger pain he had felt. He did whisper to people he was hungry but lost the ability to swallow, and hospice’s job is not to put in a feeding tube since it’s end of life care. So – even if assisted suicide is taken on a case by case basis, we need to take this into consideration. Starving and dying from dehydration aint it, folks.
- The end of life pill that is given to people – recommended weekly is 10,000 dollars a pill. Even with most insurances, they will only over 5-6 grand. 10,000 dollars to comfort a person dying – who need the most comfort. This is nuts.
- My cousins case is more than a million dollar case. People do not realize that we are already paying for NHC right now – except its through collections. After a year of medical bills being sent out, most people let them go to collections if they can not afford it. Most million dollar cases still end up being 75,000 dollars for the families. If those are not paid they go to collections and the hospitals basically write them off at the end of the year. Those collections and write offs are put on the American people, but in more so of an amount that is higher than if it was just regulated. We already pay for national health care, but in a more expensive manner, both financially and emotionally [on the people that are initially receiving those outrageous bills].
So anyways, there is my pitch for the ridiculousness of the cost of all of these things. From brain surgery, hospice, er care, resident in-care for hospital, physical therapy, radiation, chemo, and then end of life care and hospice for the second time? It just exposes so much flaw in our system that cannot be ignored while writing this.
This week I have ranged from being fine, to randomly crying to being starving to feeling sick. It’s just a constant eb and flow I haven’t figured out. My family is lucky in the sense we haven’t lost many people, but the two we have lost have been to cancer and have been under the ages of 32. It’s just a lot.
Like I said before – having mental struggles or disorders that you are working through and getting slapped in the face with grief is interesting to navigate. There always seems to be a sense of ‘why am I focusing on this when these bigger things are going on.’ But as stated before, mental disorders do not have common sense. However, I haven’t hyper-focused on my weight or feelings of myself this week which is a relief. I have been pretty busy trying to help family out and do what I can to pitch in – but because of this if any thing I have forgotten to eat a few times. But I did raise over 2 grand alone in a weekend for my family and donated it to my aunt and uncle for their immediate bills. I also recorded a song to play for my cousins funeral, which adds another layer of sadness because I physically can not be there due to me working on the other side of the country. However, I get to watch it live streamed – so that will be helpful, but I REALLY wanted to be there for my family. Funerals are for the living – it is there for closure and community – but also in the age of COVID it is very tricky.
so a busy week of teaching, photographing and now flying to Oregon to work, and also dealing with grief has been really hard on me emotionally [of course] but I feel it in my strength and exhaustion too. Just tired a lot this week. Even last night we had a group chat involving all of the cousins and we were all talking about one that was missing – and it was just a lot.
That’s all I have for you today. ❤ Thanks for reading.