Personal Plea To My Community: You Can Help Me Beat MS!
I poured my heart and soul into writing this and am taking a huge risk, so please take it seriously. For those pressed for time, I boldfaced the most important points below. This message is about a 6–7 min read, and was originally meant as an e-mail.
If you can confirm whether or not you can help (and how), that would be very much appreciated. Please respond through a PM, or e-mail me (firstname.lastname@example.org). I will then send a separate e-mail to those willing and able to help. ***
This is an e-mail I’ve been dreading to send, and I’ve been dragging my feet on this for some years now, so please understand it comes from a place of urgency.
As many of you know, I’ve been living with Multiple Sclerosis (MS) for a decade, having been diagnosed at the age of 20. MS is an autoimmune, neurodegenerative condition that can result in many symptoms, many of which vary from person to person, and I’m just so lucky to have a particularly aggressive version of it.
MS is also a progressive inflammatory condition — which means it gets continually worse and worse as the years go on, as my immune system attacks more and more of my nerve cells. Everyone I know with MS is astounded that I’m able to stay afloat in a toxic and ableist academic environment.
Anyone who has known me for a while knows I really prize my independence, that I enjoy being physically active, and that I miss community organizing and teaching. But this disease is beyond my control, and over the past decade I’ve made incredible sacrifices — experimenting with different diets, exercise routines, herbs, alternative medicine, energy healers, prayers, different classes of pharmaceutical drugs, and have even done consultation for neurosurgery.
I also know that I wouldn’t be sick were it not for environmental racism: I grew up next to one of the busiest highways in Brooklyn, and my brothers and I all ended up developing rare diseases.
I also want people to understand the indirect costs of an illness like MS: I’ve easily spent thousands of dollars throughout the years on direct and indirect medical costs, including times I’ve had to order in food or call a cab just to go to the pharmacy because I wasn’t feeling well enough to walk, drive, or hop on a bus.
I’m pretty much at my wits’ end trying to figure out solutions, even after transferring my care to the MS Center at USC in Los Angeles, and going on one of the most effective medications covered by insurance (a drug that was just approved by the FDA last year).
Still, none of this has tamed my MS. The one treatment of modern medicine that seems to be truly effective — the closest thing to a cure, with an unparalleled success rate of 70% — requires “rebooting” my immune system using my own stem cells. The other treatments for MS don’t even come close to being this effective.
I plan on sharing more information about this procedure in the coming weeks and months, using my birthday in May as a fundraiser ‘launch.’ I want to keep it on people’s radar since I will be spending this coming year waging the biggest fight of my life, trying to raise money for surgery/chemo/stem cell transplantation.
Briefly put, my insurance won’t cover it since it’s still considered ‘experimental,’ despite the numerous review studies in support of it. Not to mention that it would likely cut into the profits of evil Big Pharma. Stem cell transplantation also has a cost comparable to a year’s tuition at an elite college.
Folks, I constantly worry about how many ‘good’ years I have left before I wind up in a wheelchair, lose the ability to speak, develop dementia, etc., etc.
Right now, I’m looking for a core group of people who can help me fight MS. I’m specifically looking for help in the following:
1) HELP WITH MEDICAL FUNDRAISING CAMPAIGN
I need help with my medical fundraising campaign, since the stem cell transplantation procedure currently available in certain locations around the world is not covered by most U.S. insurances nor covered by research funds. Moreover, while there are currently some research studies being done in Chicago, New York, Puebla, Ottawa, Russia, the Philippines, etc., they still require patients to pay out of pocket, with the cheapest still being around $30k*. Trust me, I’ve done my research and contacted folks who’ve done it. I will need the collective brilliance, creativity, and skills of my community to make that kind of money, which is far more than anything I’ve ever made in one lump.
Hit me up if you have skills or resources in the following (or know someone who does):
- event planning,
- artistic/creative work,
- even organizational skills, translation, or writing.
- Let me know if you have contacts or special relationships to organizations with resources.
2) VOLUNTEERS FOR ACUTE EMERGENCY SITUATIONS
I also need volunteers who live in San Diego-Tijuana who can provide support in acute emergency situations (e.g. when I’m suffering a flare/relapse or feeling super sick).
My flares seem to be happening now at least once or twice a year, and they will likely increase in frequency as the condition progresses. This month I got so sick I couldn’t pick up medications I needed, which then created a domino effect: I was in so much pain I couldn’t sleep, which worsened the pain, which worsened the fatigue, etc., etc. Were it not for a friend of mine who lives in Tijuana, I’d probably still be bed-bound.
I need people who can help with picking up medications, groceries, as well as coordinate communication (to UCSD, doctors, etc.).
For now, I just need you to reply with a brief confirmation if you are willing and able to help: preferred e-mail (if not this one), phone number, or however else you prefer to be contacted. Let me know if you can help with 1 or 2 (or both). There will also be an opportunity to donate, and I will send a separate e-mail to volunteers.
I really need my community to show up for me. I don’t have much family in this country, with my only family here being in NY and LA — namely, my immigrant parents who make s**t wages as undervalued maintenance workers, and some cousins.
I’m queer, single, disabled, and earned below the poverty line this past year. Since my condition is mostly invisible, it’s also a struggle trying to get accommodations I seriously need. I’m also waging a battle to get on SSDI — and trust me, it’s not as easy as you would think.
An FYI: I also don’t have the emotional energy right now to engage with any responses to this e-mail, although I’ll be open to discussing things in the future. I know y’all are caring, empathetic people who will probably have responses to this plea for help, but right now I’m politely asking that you withhold that for later.
I hate that I have to write this and make myself so vulnerable just to get help others take for granted. I hate that I have to deal with people’s daily ignorance, insensitivity, or skepticism while I struggle with symptoms that really f’ing suck (all while having privileges others with MS don’t have!).
Still, I believe in people at the end of the day. I believe there’s still a lot of good and beauty in this world, even amid all the destruction and violence, and I really want to believe something good could come out of all this.
Please briefly let me now if you can help with 1) or 2) or both. Y’all are brilliant, savvy people with plenty of skills to offer, and I promise to return the favor in my own way.
- While research studies usually cover the costs incurred in experimental procedures, HSCT is considered one of those ‘pay to play’ research studies. They want patients to cover the cost because of the (now slight) risk of death.
Ottawa Hospital’s Video on Stem Cell Transplantation for MS (5 min):
Here are a couple of GoFundMe sites from other HSCT fundraisers:
Hello. My name is Alma and like many people here, I haven't done this before but I am desperate. I'm a single mother…www.gofundme.com
I am currently battling a progressive and disabling form of multiple sclerosis (MS), after being diagnosed in 2011, at…www.gofundme.co