Treatment for James
James Strazza has very severe ME/CFS and has been 100% bed bound and unable to care for himself since January 2020. I'm James's mom. The purpose of this fundraiser is to help support his care and treatment.
James wants me to help you understand what life is like right now. It’s difficult, because, unless I was here every day, experiencing this with him, I would not be able to imagine it from a description. This diagram shows a few of the ways James copes.
Extreme sensitivity to light means light hurts his brain. He has very special light bulbs he controls with his phone and when I’m in his room I’m basically feeling my way around, doing things pretty much blindly. He puts a black sleep mask on so I can turn on the light – which I really must do to get some things done.
What this means: He has not been able to look at the sky for two years. When we take him outside by ambulance his eyes are fully protected.
Extreme sensitivity to sound means that sound hurts his brain. He wears noise-cancelling headphones all day every day. He adds foam hear plugs under them when a neighbor is mowing their lawn, or when I’m doing something noisy in the room, like changing bandages on his toes. In February of 2020 he had a 45-minute seizure because my dog barked right outside of his closed door. It was a terrifying experience. It hasn’t happened since because I work super hard to protect him from noise.
Extreme sensitivity to “input” means that he cannot listen to speaking, watch a video, or read. He can process a word or two and read a sentence or two. Any more than that and his brain starts to hurt. If the other person doesn’t stop talking, etc., it will give him a “brain crash.” This means that he will suffer for a few hours, potentially a whole day. He fears this pain and suffering more than anything. During the crash he cannot look at his phone at all – not to check the time, not at all. He can’t talk to Siri. He can’t do anything but lie in darkness and silence and wait for hours and hours in total isolation before he can do any tiny thing at all.
Extreme fatigue means he cannot expend physical energy without suffering a serious consequence. He can’t pick up anything that weighs more than a few ounces. He can lift his phone, he can lift a plastic fork for food, or a pill bottle for a pill, but he can’t hold his arm up long enough to, for example, shave his beard. He can’t sit up. He can’t stand or walk. Doing one small task, such as reaching around next to him on his bed for something he can’t find, can give him a “crash.” During a physical crash (vs. a brain crash) he loses the ability to do anything with his arms at all. I have to feed him, or, if it’s so bad that he doesn’t have the strength to chew, put a straw in his mouth so he can sip pureed soup.
He does not experience brain fog, which many with ME/CFS have. His brain works brilliantly, but right now he can’t do anything with the many creative thoughts he has.
James is a musician. Here are some songs he’s written, performed by others or videos from before he became so ill. And here’s an album he released recently with much effort. Now he can only dream of ever holding a guitar again.
In July of 2020 he began writing poetry for the first time in his life. We published a book of more than a hundred poems in October of 2020. He kept writing. He has another book to publish now. But I’m too overwhelmed with his care to produce it. It’s a lot of work. And, sadly, in the past several months he’s become too sick to keep writing poems. These days he can’t use Siri on his phone for more than a few minutes at a time. Here are his recent poetry posts on Instagram . If you check out the Reels and Videos there, you’ll see his fans performing his poems for him, since he can’t do it.
Here are some helpful links to learn more. Another patient shares her story here , someone describes the levels of severity here , and the government provides some facts here . Most importantly, here is a short video of James trying to shave , which gives you a first-hand sense of how dramatically a small effort impacts his ability to even eat.
Having fought for Social Security Disability, and with it Medicaid, I've struggled for the past year to get no-cost care James needs through this means. The level of frustration, and number of tears shed, over the inadequacies of Medicaid services are abundant. Here's a summary:
- Medicaid only pays $10 an hour, attracting the least-qualified caregivers.
- Agencies give caregivers rules which compromise their ability to help as we need.
- The Medicaid caregiver app doesn't work, and when they aren't paid because of it, they quit.
- I have gone weeks at a time with no help, as they try to find someone new to work with James.
I’m on disability myself. My own health is compromised by a chronic, progressive illness, which gets worse with lack of sleep and the stress of 24/7 caregiving, when I have no caregivers to help.
Therefore, I have privately hired high-quality people who do whatever is needed.
Most of James’ medical care is not covered by Medicaid. His excellent ME/CFS specialist is out-of-state. Most of his treatments are in the form of supplements and over-the-counter drugs which are not covered. Most of those average about $60 a month, but there are some that are extremely expensive (up to $1,000 a month for a new one). I am including a photo of everything that James takes every day. Some are as basic as all of the B vitamins; others are a little more obscure. Prescriptions are covered unless they are compounds. Those are out-of-pocket like the supplements.
One of his odd symptoms is urinary hesitancy. He’ll feel the urge to pee, but it can take up to an hour for the stream to start. We learned that this is a symptom of a rare condition that some with ME/CFS develop – Adult Occult Tethered Cord. The bottom of the spinal cord has a filum which becomes fatty or stiffens, creating tension which causes neurological problems, including neurogenic bladder. The severity of James’s neurological issues (light/sound sensitivity etc.) might be caused by this condition. There are those with ME/CFS who, after having tethered cord release surgery, see a huge improvement in their ME symptoms.
At the end of this month, November 2021, we are meeting with a South Carolina neurosurgeon to discuss this surgery for James. We are very hopeful that, since the treatments he is receiving help others but don’t help him, tethered cord is the reason for the severity of his condition. Getting the surgery would not cure him, but most people with ME/CFS can stand and walk to the bathroom, sit on a sofa, look out a window…
The honest truth is that James wants to live, but not like this, so I’ll explore anything with even a remote possibility of helping him. Right now he’s on, what might be considered, two experimental drugs – one of them is $1,000 a month. But with or without these, he’s gradually getting worse, not better. Since tethered cord is a progressive condition, this further encourages us to pursue it. The most common cause of death for people with ME/CFS is suicide. I’m fighting every day to keep James from giving up.
Without knowing what was going on over the years, James’s ME/CFS progressed slowly following a serious Epstein Barr Virus in 2010. His disease is considered a post-viral syndrome. Those with Long Haul Covid experience similar symptoms, with an added pulmonary element. Universal awareness of Long Haul Covid, but not ME/CFS, can be attributed to the media-focus of the Covid-19 virus, an exposure which—along with research funding—have historically not benefitted patients with ME/CFS. The chart below shows the contrast in funding priorities. For example, 2,000 Americans have brain cancer, which receives more than $300,000,000 in funding. By contrast, ME/CFS impacts 2,000,000 Americans, and receives only $16,000,000.
After we all told him for years to “just do it,” pushing him to push himself, we learned that this is exactly what makes his condition worse. His family and friends are all guilty of adding to his suffering by having no clue what was going on as he became weaker and weaker, more and more fatigued. Here's a photo of James before he became bed bound with ME/CFS.
Please help me care for James as we daily grasp at hope, like an elusive feather in the wind. Every day takes a mountain of effort, and over each horizon is one more thing to try. I can’t give up on him. He’s brilliant, funny, caring, and so creative. The world needs what he could share… if he could. We have to keep trying anything that might help, so he can.
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