Monica's Medical Fund Against Lyme
My name's Will, and my sister Monica has been sick for too long. She's only 24 years old, and she wants to have a life. What she has done with her life so far has been remarkable -- she was a counselor and coordinator at a halfway house for pregnant underpriveleged women in Chicago. This felt like her life's calling -- but she had to leave it for yet another medical emergency in a string of medical emergencies. Over the years, the diagnosis has been hard to pin down: Crohns? Colitis? Endometriosis?At hospitals spanning the USA, there has not been a consensus. It seemingly never ends. Right now, she's bedridden, emaciated, and more than anything, exhausted.
But now there's a surgery that might be able to help: laparoscopic surgery. But in order to get that surgery, she first needs to get more healthy. And in order to get more healthy, she needs to stop stressing about her absurd medical debt.
I'm raising money because she's flat broke, and she has nearly $20,000 in medical debt. With the new surgery coming up, she's at her wit's end about how to pay for this. She has very little energy, and she's just trying to get better. Meanwhile, she's having to worry about debt collectors calling her to receive payment from her hospital stays (weeks & months at a time), radiology, CT scans, X-rays, ER visits, and specialist doctor visits. The hospital stays and radiology cost the most, but all of it is eating at her.
The money will be used to pay off the debt directly and immediately, so that she's no longer hounded by debt collectors and can focus on her health. The rest of the money will be used for her upcoming laparoscopic surgery, which hopefully will provide real answers for her. We need the funds as soon as possible.
This would mean so much to me and to Monica and to our whole family. She's been through so much, and she's still so young. She wants to help people -- it's her greatest wish in life. But first she needs to help herself. And she can't do it alone. Monica is loving, big-hearted, spiritual, and wise beyond her years. If you know her, you know this. If you haven't met her, hopefully you have the chance to meet her soon. She's the best.
Monica and I come from a big family, but we've never been well-off. There's only so much my parents can do, and their health is suffering from the stress and worry over her. We would all be extremely grateful for anything you could give. And perhaps you could also spread the word.
Thank you so much for your time and attention.
Now, once again, we ask for your prayers. I have been experiencing paralysis more than I ever have, and last evening (Divine Mercy Sunday) it culminated in a very terrifying way as I had some sort of epileptic fit for several hours. I do not remember everything that happened, but what began as being unable to move my body developed into intensely painful convulsions, especially on my right side, and I lost the ability to speak. Thankfully, my dear friend was with me and I got to the hospital by ambulance. Much of it is a blur, but I remember feeling very terrified and praying that I would be able to speak again and praying for peace for my family and friends. My parents’ flight landed from New York while I was in the ER and they came straight to the hospital. The ER doctor knows my parents (tiny town), and he was wonderful- and he said that these episodes of paralysis and this seizure could be the beginnings of epilepsy and that I need to work more with my neurologist to figure that out- but it is also, unfortunately, symptomatic of the most advanced stages of Lyme disease.
And so we ask for your prayers. My treatment in California was so good, but it is difficult for all of us that I am in one of the lowest valleys I have ever been in after having had intensive treatment for many months. But this reality gives us a drive to fight and to pursue other options and do the next right thing. I am so thankful for all of our dear friends who have suffered with Lyme as well, who are leading us in what feels like a walk in the pitch dark.
I love all of you, and I am so very grateful for what you have done and all that you do. Please pray for the chronically ill. Please pray for those with this disease and join us in raising awareness for it. Please pray for the dying- especially those who do not have anyone to care for them. And please pray for the soul of Kelly Gaffney, who died last week from cancer and whose funeral is today. Kelly suffered so beautifully and loved so well-- she is a bright, bright light still, and in her own incredible pain, she was a selfless joy and force of goodness for me and so many others.
God bless you all, and I love you so much, and I thank God everyday for you.
“Eternal God, in whom mercy is endless and the treasury of compassion — inexhaustible, look kindly upon us and increase Your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to Your holy will, which is Love and Mercy itself. Jesus, I trust in You.”
All my love,
I just wanted to take a moment to share a special project with you. This is a music video I made for my friend Evan's wonderful band -- Pinegrove. It's a music video shot on an i-Phone about Monica -- two days in the life of living with chronic illness. If you have a moment to watch it, I'd be extremely grateful, and I'd be especially grateful if you'd be willing to share it & spread it around. Also, I'm including a bit about the history of the project below. The way it all came about was pretty great.
Last time I was on the west coast my friend Will invited me to visit his sister Monica at her treatment center & play some songs for her. While we were there we started talking about how a song's narrative can fit alongside your life, & how when it intertwines, you feel stronger & less alone. That led to the idea of Will & Monica making a short movie the last few days of his visit, to express Monica's story in parallel to Size of the Moon. The result is an open window into one person's experience living with Advanced Chronic Lyme Disease. It shows the emotional yoyoing of it — by turns monotonous, sad, hopeful, surreal — an intense microcosm of everything it is to be alive. The video represents my friends' expression of Monica's story & we're honored to have our song occupy the same space for a moment.
—Evan Stephens Hall 04.11.17
I was out visiting my sister Monica in California where she was receiving care at a treatment center outside of LA, one of the few places in the country that specializes in Advanced Chronic Lyme Disease. She needed a caregiver to take her to her appointments, cook meals for her, and just generally hang out with her. We watched a lot of TV — most of it about O.J. Simpson. Anyway, towards the end of my stay there, I realized that Evan was playing some solo sets in the area, and I asked if he wanted to come play a little show for Monica. She's a fan of Pinegrove. He said yes! So Evan came and played a show for her in her hotel room. It was very good. He played music and we talked a lot — the conversation ended up at the intersection of disease & art, how limitation is often painful, but can yield to something beautiful and unexpected. Monica has an ability to see beauty and warmth in everything — it's her best defense against this disease and has been a shining example to me throughout this whole ordeal.
After Evan left we texted about the possibility of making a video for "Size of the Moon" about Monica, for Monica, starring Monica. I was only in town for 2 more days, and the only device I could film with was Monica's old i-Phone. (I don't have a smartphone.) Suddenly the parallels between our conversation & our present became clear. I wanted to go for it — so I went for it.
And as I worked, the limitations on my end piled up — data limit, space on her phone, problems uploading the footage. It was hard also because the treatment center is a quiet zone, and people are there for serious treatment, so I had to be stealthy. Also, Monica was in a lot of pain & being filmed was an anxious process for her, so it was hard to navigate how much to film. Before I left, I started to put together a cut. My Final Cut Pro crashed and wouldn't open, so I started editing this on iMovie -- the worst editing software out there. I leaned into it. The mechanical restrictions, the raw, flawed sterility of the footage—it all felt right.
The video ends with footage my frequent collaborator Kenny Polyak had taken in Wyoming, where my parents and Monica live — the place she's always dreaming of. The contrast in visual quality mirrors that distance. One she saw the first cut, Monica gave me her blessing — she knew that it would help other people struggling with chronic illnesses feel less alone.
Throughout all of this, Evan and I have been talking about the therapeutic properties of music, and I've been trying to practice art as gift-giving. I've been impressed by Pinegrove's generosity of spirit, and they way they re-tweet and promote fans' interpretations of their work and message. This project, created in conversation with Evan, felt like a parallel work to "Size of the Moon." It's deeply inspired by the song, but it's also using the song as a shape, a form, to help things feel better.
There's something that feels right about having this video to this song — something gritty & intimate, stiched-together & hand-made, alive with hyperreal familiarity & sadness — and the urge to both stay in it and flee it — visit the future & dance in a field of light.
On top of all this, we've been fighting Monica's medical fight against Lyme. It's a mysterious, rapidly-evolving disease, and it's extremely dangerous. Unfortunately, the medical establishment & particularly the health insurance companies are gravely behind in their approach to the disease. Insurance doesn't cover any of Monica's treatment. We've been forced to fundraise to keep Monica afloat. It's an exhausting endeavor. If anyone who sees this video is inspired to help out, they can donate to her fund here. It's also extremely helpful just to spread the word & share the video. Ultimately, it's a piece about one woman during two days of a difficult journey. Throughout this all, Monica has struggled as much with mental and emotional pain as with physical pain, and she and I would quote this line of Evan's: "Do you wanna die? Fine, you're right, but I wonder what it feels like to stop feeling so alive." More than anything, I want this to be a video about being alive. That's all.
After four months receiving treatment at Whitaker in California, Monica is back in beautiful Wyoming, which is bringing her so much peace & strength. We're waiting to see how much the past four months of treatment have helped, and we're also moving into a necessary and expensive new period of treatment. Monica's going to be doing infusions of immunoglobulin, which is a proven tactic to help beat Lyme, which wreaks havoc on the immune system. Monica just paid most of her hospital bills and medical bills from Whitaker and the fund is dwindling very much. We raised so much the past 13 months and we are so, so, grateful-- we don't know what we'd do without it. But -- exhaustingly -- in order to go on with the treatment, we must raise more.
The future is tough and it is expensive. Intense and painful paralysis has started happening to her more frequently. There are so many expensive treatments ahead -- supplementation, light beds and especially immunoglobulin IVs. They are thousands of dollars and absolutely essential that she get them if she's going to beat this thing.
We hoped so much that she'd be doing a lot better than she is -- and in some ways she is, but there are a lot of symptoms that are coming back or worsening. It is so exhausting and inconvenient -- in fact, Monica wrote about inconvenience recently and how it so often lands us in our most joyful surprises. We'd like to share that below.
Before I do that, I'd just encourage you to share this campaign with anyone you think might be interested in donating. Every little donation goes a long way. We're so grateful for your support. This whole process has been a
reminder of how much goodness there is -- in the world & in you, you, you.
Here's Monica, on inconvenience:
The night before I left California, I went to confession with my friend. The priest asked me: “Is your illness just an inconvenience?” And I don’t think he meant his question to be profound, but I cannot stop thinking about it. When my heart is disposed incorrectly, no matter the severity of my illness-- yes, it is just an inconvenience to what I want. It is an inconvenience to the comfort I desire. It is an inconvenience because I am terrified of pain. An inconvenience to me, me, me-- to what I had dreamed, to what I have been, to where I thought I would be.
Suffering is inconvenient. But even the slightest things that hinder and interfere with what we had planned, or eradicate it completely, are so often our biggest gifts and greatest memories. They stumble us along to our best friends, wisest teachers and deepest loves.
Discomfort and annoyance slow us down and make us laugh and force us out of the familiarity of ourselves. When the tire blows and it’s hot outside and everything is the worst and then a stranger comes along to help you, suddenly you are just fine and on your way and better than you were in the morning, when you thought you knew exactly how your day would go. Inconvenience leaves you vulnerable, receptive to generosity. When you wake up feeling alright and by the evening you are paralyzed on the couch for hours, contorted and rigid and heavy as the world-- your mother trying desperately to help you, trying to stay calm, trying to fight back the tears and horror-- and then your parents carry you upstairs and your dad makes a joke and somehow all of you end up laughing so, so hard and that inconvenient and humiliating and gorgeous moment with them is more edifying than memories when everything was easy.
Maybe inconvenience is just surprise that makes our faces flush with petulance and anger, and then we have a choice-- always, always a choice-- Give in to the red hot shame or give in to grace? Give up the facade of having it all together and let the surprise that has diverted your path teach you?
Yes, this is inconvenient. Sometimes I hate it all so much. But who am I to rue it all- all that has shot me into something far greater than my closed, confined world?
“At the end of my suffering, there was a door.” (Louise Gluck)
Thank you all and we hope you're having a wonderful week!! If you could pass along this campaign to some friends, we'd be very grateful.
You may want to watch these informative videos. --CL Episode 1: Autoimmune Disease Revealed, The Shocking Truth About Conventional Medicine, Medication Misuse And Abuse And Is Functional Medicine The Answer? https://www.youtube.com/watch?feature=player_embedded&v=bQclmTZuPL4#t=0 Episode 2: The Leaky Gut Problem, Detection And Diagnosis, Rheumatoid Arthritis, Case Studies Of Gut Disease Reversal https://www.youtube.com/watch?feature=player_embedded&v=6r_i6dhJXUM#t=0 Episode 3: The Microbiome and How To Restore The Good Bacteria, Plus Colitis & Gut Disease Success Stories https://www.youtube.com/watch?feature=player_embedded&v=TB0dDbGK1ks#t=0 Episode 4: Digestive Diseases, Inflammatory Bowel Disease, Gluten Sensitivity, Celiac Disease https://www.youtube.com/watch?feature=player_embedded&v=VUrrlw8Yugo#t=0 Episode 5: Environmental Toxin Triggers & How To Protect Yourself And Your Family from the Onslaught https://www.youtube.com/watch?feature=player_embedded&v=XryxrzehtPI#t=0 Episode 6: Autoimmunity and Brain Disorders: Alzheimer's, Parkinson's, Multiple Sclerosis, Dementia, and Autism https://www.youtube.com/watch?feature=player_embedded&v=53cE3Z_-SmI#t=0 Episode 7: "I Reversed Autoimmune Disease! The Emotional Stories of Those That Overcame Multiple Sclerosis, Psoriasis, Lupus, Asthma, Autoimmune Hepatitis, Chronic Fatigue, and More" https://www.youtube.com/watch?feature=player_embedded&v=UcIo3D34y_c#t=0
I could watch it over and over again. I just want to see YOU. Praying.
Even in sickness your beauty shines through. We faithfully pray for every single need to be met. Love to you and all who are stepping up to help you, Monica.
Dear Monica, keeping you in prayer. There is a Mass that will be for you today Dec 14 (Memorial of St. John of the Cross) at St. Nicholas in Los Altos. May God bless and hold you in the palm of His Hands.
Monica, I've been reading quite a bit on the life of Flannery O'connor and her published letters written between herself and Our Maker. Instantly, you come to mind. I hope during some respite in your feeling unwell, you get a chance to read some of these beautiful letters so as to feel you have another being having endured great hardship in your journey with Christ, Lifting you up, fellow UD family. Catherine Alvis
Prayers are flooding heaven for your health, peace and well-being! God loves you to the moon-and back! Keep the faith! Hugs, Kathi
Richard, how amazing that we start on the same day! Saint Nicolas, pray for us!
I go in to Cedars Sinai on the 6th. for the pre-op for my kidney transplant scheduled for Dec. 20th. Let's pray for each other as we receive treatment! God bless you! Richard Ferrier
Will, Julia, Monica, Please check out the copay programs for Humira and Remicade. It may not work if the use is off-label, and I'm not certain about the hospital version of the drugs (rather than the ones you inject at home), but if it works out it will be worth many thousands of $. http://www.remicade.com/crohns-disease/co-pay-support https://www.humira.com/humira-complete/cost-and-copay With our prayers, John
Praise God!! Wow!! So happy dear friend.