Support Jackie's battle with ME (myalgic encephalomyelitis)

Hi all!

 I am severely ill and I’m asking for your help to aid my recovery. You guys all know me as someone who is very direct and authentic so here is my situation. 7 weeks ago I hiked 4.5 miles, 4 weeks ago I stopped being able to walk or even sit up. I have very severe myalgic encephalomyelitis (ME) which means that my muscles and my brain are severely inflamed. They’re not able to use energy in my body correctly and they get severely fatigued and weakened extremely quickly. For example, it took me over two weeks to create this GoFundMe with voice to text in small increments. But it was important to me that you hear from me directly. I apologize for any grammatical errors as it is difficult for me to edit this.

I am unable to feed myself, stand, walk, or sit unassisted. When I crash I am unable to even move my hands or speak more than a single word at a time, it becomes difficult to swallow, my breathing is depressed and my pulse oxygen falls below healthy levels. During my worst crashes I cannot think more than a word at time-my very essence seems to go away.  When I ask not crashing it is difficult for me to concentrate for more than a few minutes at a time and hold conversations. I cannot listen to audiobooks, podcasts, or watch television. I cannot read for more than a few minutes without causing severe fatigue and risking a crash. I am extremely sensitive to light and sound, it can be painful to hear loud noises or see sunlight. I have been completely bed-bound for over a month.

I was hospitalized and in a recovery facility for two weeks last month, where I got much worse. Under the advice of my doctors, my friends worked tirelessly to get me home while we also searched for possible assisted living facilities. Being at home is incredibly expensive because I need 24/7 assistance. My care team searched high and low for other options but there really isn’t a place for someone like me currently. We expanded our search to a three country area and found only one facility that would take me (I am too young, and I need a high level of care-this disqualified me from most places). I am on the wait-list for that one group home-it would cost $14,000/month. 

My neurologist thinks that I could recover some of my mobility and intellectual skills. He believes that if I have proper care at home I have the best chance at improving and regaining my independence. 

People with ME regain abilities slowly, this means that it may take many months before I regain my independence. There’s no cure, and there are no FDA approved treatments. Only 5% of people regain full functioning. It is possible to slowly regain some of your abilities with careful pacing, and so that means that this next period of time is incredibly important. This time is especially important also because each crash I experience lowers my baseline and makes it more unlikely that I will recover. 

You may be wondering, what causes ME. The answer is that no one knows. Personally I developed disabling symptoms after a stomach endoscopy in April. ME can be caused by trauma like that. Other times it is caused by infection. It is possible that the upper respiratory infection or food poisoning I had inVietnam led to this. It is also possible that it is a result of a mild Covid affection I had in September that caused lingering issues for months. It might also be a combination of all of them. My neurologist emphasized that the cause was not that important. What is important is learning to live with my new reality: a life long illness with no approved treatment or cure 

Home care (and the faculty I'm on the wait-list for) is extraordinarily expensive and I am going to quickly exhaust all of my resources in order to give myself the best chance at recovery, even with the amazing support of so many friends in my community who have been taking on some of my caretaking. Everyone is also searching for ways to make my care more affordable as well, but so far this is the cheapest way we have found. I have been home two weeks and have already improved dramatically. I am able to speak in full sentences. I am able to use my hands. I am able to move relatively well in the bed. All things that were not possible in the rehab facility. 

I would ask you to consider donating to this go fund me because every bit of money you give gives me a better chance at getting a bit of my life back. Please don’t look at the goal because I know it is overwhelming. It’s overwhelming for me too. Just think about what you might be able to give. I currently need 24 hour assistance and that is $30 an hour so each bit of money that you give me gives me another bit of rest, and a chance to get better. It is like giving me a bit of your time on my healing journey. I will be forever grateful for whatever you’re able to contribute. Thank you so much!  

Current expenses: 

Home healthcare $30/hr = $720/day = $5,040/wk = $20,160/mo 

In addition to the in-home caregivers, I have had to purchase adaptive medical equipment to be able to live at home and use as I progress, and have some medical expenses that are not currently covered by insurance. Here are some examples: Hospital bed-$250/month Walker-$67 Purewick-$600 Bedside commode-$55 Medical style bedside table-$58 Latex gloves $9 box Surgical masks $12.99 Reusable pads are $33 Blackout curtains-$26 Wipes $20 for box of 6 Call bell $27 Medical Transportation $2500

I would also say that you might have doubts that we are looking as thoroughly as we can for ways to finance my care. I want to reassure you that I have a team of 8 friends who are working tirelessly on my behalf. I was assigned a social worker, but she told me she couldn’t help me. Please don’t doubt that we are leaving no stone unturned and will use any money that you give to me very wisely. There is shockingly little support because of my age and also because of my condition. 

Lastly, if you want to learn more about ME/CFS there is a film about my condition "Unrest" (2017) it is available for free on YouTube. I am definitely worse than the woman who made the film, but I think it gives you a sense of the illness. I haven’t watched it beyond the trailer but her description of living a big vibrant life and suddenly it all just went away? And there’s no cure and very little hope? That is my reality. Any amount that you can give gives me a better chance of getting better and gives me a bit more hope. I will be forever grateful for your help and your gift of hope.