Help move Joy out of homelessness
I'd like to open by sharing who I am (Joy, a 50-year old single mother of two young adults); what my goal is (to shift from homelessness to a one-year apartment lease); how I became homeless (a very unexpected cancer diagnosis resulting in a bone marrow transplant and a bunch of medical restrictions); and how you can help (by contributing monetary gifts in the form of donations, and by sharing my campaign request with your friends and community).
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As you read through, it might feel as if I'm casual about the timing of moving. As if there is no urgency. I think that is solely due to the dollar amount needed to move. That it's quite large, and from this vantage point, my mind thinks it might take months to fund this campaign or maybe it won't be fully funded, so I built in a buffer of three months time. But, it's also possible that my campaign is fully funded quite soon - within days!, or weeks! - and I'd move the moment I have the funds to do so. Gladly and joyfully! As I write this, my room at this hotel is paid through June 20th, and I could move *just.like.that* if I had the money to do so.
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I'm pretty sure that the people who donate to me will be friends, who know my story well. If my friends share this campaign, then those who donate might also include people who don't know me and are not familiar with my story at all. In case you are not familiar, and/or would like a 'refresher', I'll share the highlights of my recent experience with MDS (a blood cancer) and the treatment., which is also the story of how I became homeless. I'm choosing to explain because I think that expands understanding, and understanding builds connection - which is all very important to me. Plus, if I was investing in someone, I'd like to know how it makes a difference, and you might feel the same.
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First, about homelessness. Some people have told me that they think I am not homeless because I'm in a budget hotel room, and not on the streets. I rent a room in this budget hotel, month-to-month, and I have no income, and am on medical restrictions; so yes, while I do have temporary shelter, I am also considered homeless. While I am in survival mode, I do have a bit more privilege than someone on the streets, because I have basic comfort and safety (although things are sketchy here, at this budget hotel, I'm not directly involved). While I am incredibly grateful for what I do have, and that I'm not on the streets, there is a lot of stress to not having a permanent living space, and not having resources to choose something different that is more stable.
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I can't make such a big change on my own, so, here I am, asking for community support in the form of monetary gifts, to improve the quality of my life, by helping move me from homelessness to a stable permanent living space for one year. My goal is to raise enough funds to sponsor a one-year lease on an apartment, along with living expenses for the year, and 3 months rent for the budget hotel that I am still living in, until the total of these funds come through. GoFundMe charges 2.9% handling fee so I added that in to the total. Any extra funds will go towards paying off my credit card, which I have been using to make up the difference of monthly rent here at this budget hotel. (Do I think that this request will be funded in three months time? I'm not sure. If not, I'll need to use some of the contributions from this campaign to extend my time at the hotel.)
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Timing (of three months): My two-year 're-birthday' (my transplant date) is August 29th, and it would be great to be in an apartment, starting fresh, again. Also, my son returns to college f/t around then, and it would be very helpful for me to back in my hometown before his availability changes. Renting month to month at this hotel is only a viable solution as long as I get a good sale rate and I received a letter from management that my rate is good through mid-September.
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Since I am on medical restrictions - and will be for an undetermined time, more, while Graft Versus Host Disease continues to compromise my brand new immune system - I logistically do not qualify for an apartment lease. My goal is to 'buy my way in', by paying a one year lease in total. My hope is to rent that apartment back in my hometown, which I've been away from during my transplant recovery and miss very much.
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My hometown is an hour's drive away, and I don't drive (or have a car). Being away from my hometown during the pandemic when everything was closed was okay. But, now, being so far removed, creates extra layers of challenge, in an already hard experience. Moving back, from here, will greatly improve my quality of life, and the only way to do so is with community support. Which is where you come in.
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How will a 'simple move' improve my quality of life? What can I do in my hometown that I can't here? Most importantly, living in my own space will 'help me to keep my bubble', by eliminating my current exposure to germs, from living in a now-busy-hotel, full of staff, and tourists. Almost equally as important, moving back to my hometown will mean that I can work with my local medical team to complement my transplant care (something I've not had access to this part year!), and can use the free healthcare resources there, which includes medical drivers, and body work and art therapy through two cancer centers. All of which are not available to me here. An added benefit would be feeling less isolated, because I'd be close to my friend group and in weather that allows for outdoor visits.
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It is true that living in So Ca is very expensive, and that includes rent. For perspective, the lowest rent I've found, in a safe area, for a studio apartment is $1900 per unit, per month. The next lowest is up to $2100 per unit per month. If you don't live in So Ca, that might sound like rent for a luxury complex, but that is basic pricing (gosh, even renting a room in other nearby cities costs as much as that!) . In my funding ask, I've included utilities (wifi, cell phone, electricity, water and trash), groceries, funds to use Uber or hire a personal driver one ride a week (since I don't drive, I need to make sure I have a ride for errands), basic furniture (a bed, couch, table and chairs, because I have nothing), and three months rent for the budget hotel I'm currently staying in (although it might take longer to meet this goal, three months seemed maybe do-able). I am asking for just enough, which is already *a lot*. I absolutely understand that many people were impacted by the pandemic, so money might be tight. If there was any other way to do this, without asking for money, I would have! Every monetary gift helps, as does sharing this request with your friends.
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It's not an 'easy ask'. But, I know that if I don't ask, I can't receive, and continuing to stay here at this budget hotel has now exposed me to greater risk as far as germ management, and being far removed from helpful emotional and physical support. Renting a room in this budget hotel was a wise choice during the pandemic - mainly because it kept me off the streets while allowing me to keep my pandemic bubble small, and start the transplant healing process. Now, since the financial cost is similar to renting an apartment, it makes sense to put that money towards an apartment stay, which also keeps me safe, and gives me access to more resources. But, the leap from here to there, requires community support to make it work.
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The big change that 'popped my pandemic bubble', here at this hotel, is that it's one of three on this street, that tourists going to a local theme park stay in; now that my county, and the theme park, has opened, it's been booked solid. Currently, the staff follows social distancing protocol, but they don't enforce it with guests. My state (CA) is opening fully on June 15th which adds greater risk to me staying here, where I'm sharing indoor space with tourists from all over. That's more people than I've been exposed to in two years! Because my immune system is new *and* compromised, I'm susceptible to most anything, so my concern has increased, greatly.
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You might wonder how I got to this position in life. That's fair. I'll share a bit about my cancer journey leading to homelessness:
In spring of 2018, I donated almost everything I own - including a studio apartment full of furniture, and my car - to move from So Ca to Oahu, HI to be a caregiver for a toddler whose family I worked for previously, until they moved to Oahu. That's important, because that's how I came to be with minimal 'stuff'.
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I am a single mom to two kids, who were then 18 and 20 (their dad and I divorced when they were young). My son moved in with his dad, and my daughter was living with friends (as she wrestled with addiction). Over that summer, my daughter's addiction peaked, and I thought she might die, so I made the decision to move back to So Ca, to be closer to her. I came back to So Ca, in October 2018. I rented a room from a listing on Craigslist, thinking it would be temporary while I found another job, and could then rent my own space.
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(A note: when I was diagnosed, my daughter chose to go to sober living to get clean. She relapsed, and was in and out of treatment through to my transplant date, which is also her clean date. I thought she was going to die, but it was really me!, I just didn't know.)
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Thanksgiving week, in November 2018, I was driving back from an outing, and felt light-headed, like my brain was 'powering down'. It was odd enough that I pulled over and called for an ambulance. I am holistic by nature, so to call for an ambulance was radical for me. I kind of thought I just needed protein, but something within must have known it was something bigger. After my blood test came back, I was admitted to the hospital, and put through a series of really big tests!, given several blood products and a referral to an oncologist. (That was all unexpected and surprising!)
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My counts were super low. I had no idea. I didn't feel sick, in general. I was active with the toddler, and active athletically, and full of good energy. The medical staff said that my counts were so low, they were surprised I was able to walk unassisted! They were all astonished that I made it through airline flights without fainting or medical problems!
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In December 2018, my oncologist thought I had advanced leukemia and that I had about two weeks left to live. Shocking! After a bone marrow biopsy, I was very unexpectedly diagnosed with MDS (a blood cancer) at the most critical stage. Also, at that appointment, due to my compromised immune system, I was put on restrictions, which included food restrictions and quite a few activity restrictions. Since I was going to be in full time chemo, and my days would be full of medical appointments, I wasn't available to be hired for a job. My life changed, just like that. I've been on restrictions ever since.
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Seriously, I thought I needed a bite of protein, but I needed a bone marrow transplant. That shook me to my core. I'm glad I came home from O'ahu. I'm glad I called an ambulance. But, gosh, what a sudden, big change.
I started intense chemo January 2nd, 2019 - seven days on, three weeks off, seven days on, straight through to my transplant. Fortunately, my body responded well. I was told there was no cure for MDS (there isn't), but in order to live, I'd need a bone marrow transplant. In January 2019, I had a consult with the transplant hospital and that started the prep process, which included looking for a donor and making sure my body could withstand a bone marrow transplant. At that time, that transplant doctor said it was urgent, and that I needed a transplant by February!
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I ended up transferring my care to another hospital in May of 2019. Incredibly!, a donor was found (which was super quick!) - a 12-12 perfect match with the same blood type. My body was deemed okay to go through the bone marrow transplant, and my new 'birthday' (transplant date) is August 2019. So many miracles aligned for that to happen, and I am grateful! For perspective, a majority of patients 'ease' into the critical stage, over a large block of time, and the transplant prep and donor finding process can take several months or a year or two!
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My transplant hospital and care was in Los Angeles (still is), which is a two-hour drive from my hometown. Part of the transplant process involved direct and constant care for the first 100-days after being discharged from the hospital. For that, patients need to stay near the transplant hospital. My landlord and I were polar opposites in nature, so I didn't want to return to the room I was renting, and I didn't have enough money to rent another room, to 'hold' for myself for that 100 days. That ended up to be 'good', because it's spring 2021, and I'm still not home! (I wouldn't have known it would stretch out so long.) I stayed that 100 days, plus an extra month, in an Airbnb, in Los Angeles, funded by donations arranged by a friend.
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It's also transplant protocol to have a caregiver for that 100 days, after being discharged from the hospital (which one needs to be approved for the transplant). I'm estranged from my birth family which in general is a good choice but not when you are dying! and could use family support; I don't have a partner or a romantic love; I didn't know anyone who could pause their life for three months to care for me out-of-town; my daughter wasn't qualified and my son was young and in college. (Note: my son is incredibly mature, and...being young and caring for a dying mom would have been a heavy traumatic thing to bear.) I had two out-of-town sister friends volunteer to help me, but logistics wouldn't work for them. I ended up piecing together a team of a few local friends, along with my son, to drive into LA to caregive for me, until I was strong enough to do it for myself.
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The emotional labor involved with all of this - from arranging rides to and from chemo and medical appointments, to my daily care, to researching each piece of my transplant prep and recovery and making these decisions and also advocating - was all mine, and is still all mine. That's where I would have delegated pieces to anyone else, had there been someone to delegate to. And, that's where I began to learn to ask for help - for the rides, for the caregiving, for the gift cards - and to receive in what was offered.
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It's clear that I went into this with not enough resources. That part has added a layer of challenge to the experience. It was really life or death, and I kept choosing life. Should I have been approved for the transplant? Probably not. At the time of diagnosis, I was 48 - which is still rather young - and a mom of two kids, with a vibrancy that I'm told is inspiring and good. Everyone was pulling for me.
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After the 100 days, plus one extra month, I rented an Airbnb in my hometown for one month. At the time, I was really sick (I had rsv, coronavirus and the flu!) and my medical team did not approve of me returning home so soon, but I really wanted to be there. That was February 2020, just before the pandemic. I was still on restrictions (and sick!) so returning to work or 'regular life' was off the table. I had few options as far as how to proceed without income. (An aside: I told my medical team I was homeless, and they said unfortunately that happens more than people think.) A local friend offered a room in her home, for 3 months. The problem was that she had cats, and one restriction was that I couldn't be around cats or dogs. I took that risk because that was the option I had. I spent most of that three months, sequestered away in that room, coming out to use the kitchen or go outside for a walk.
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The pandemic happened and social distancing started in our town in March 2020. I was also still recovering from being sick. My doctor wasn't sure if my body was still recovering from being sick or if these were new symptoms, and that process of determining the cause was paused a bit with the pandemic. Because my baby immune system wasn't yet strong, and was also compromised, and covid-19 cases were high in Los Angeles, I didn't have in person appointments most of last year. I had one in September of 2020, and that's when I got referrals to specialists and it was determined that I have Graft Versus Host disease (my skin and eyes) and something they are watching in my lungs. So, I'm still on restrictions, and will continue to be, as my immune system is compromised.
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After my 3 months at my friend's house were completed, I wasn't sure where to move, or how to do it. The pandemic added a risk factor to renting a room with a stranger, and I didn't have income to rent my own space. I was seriously close to being on the streets (which obviously would have been a risk). My social worker at the time suggested that I 'squat' (illegally stay in a vacant home), because he was out of legal options for me. That would have been the time to run a GoFundMe, but the biggest obstacle to that has been if I receive in over $1k per month, I could lose my health insurance. And, I can tell you that so far my care has been billed over $1M, and now I also have specialists on my team (a pulmonologist and eye doctor specializing in GVHD), and I'd like to add an allergist, ENT and naturopath.
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Because of the pandemic, the hotels were offering amazing specials for monthly stays. Going by price only, I found this budget, extended stay hotel, for a great sale price, and I moved in May 2020. And, I'm still here. It's in Los Angeles County, and is about an hour drive from my home town. Interestingly, the hotel is on a corner of a busy city. Three directions are busy main streets with lots (blocks and blocks) of retail and restaurants (which have all been closed most of the year I've been here, and are now opening, and will open full in June). About a mile and a half the other direction is a mountain trail, and that's been a life-saver for me! When I moved here, I wasn't strong enough to walk up to the mountain trail. But, I love nature (it's where I connect to source energy), and fresh air, so when I did go outside, it was always towards that trail. Eventually, I became strong enough to walk to the trail, and now I'm strong enough to walk on it! On the days when my spirits were low, experiencing fresh air and beauty on the trail was my motivator to get out of bed. I'm not allowed to be in full sun (due to chemo making me susceptible to skin cancer, and sun triggering my GVHD skin rash), so I'd walk at sunrise or close to sunset, almost daily. Although the air quality in this town is poor, during the hot summer days, so there were many days I couldn't go outside at all. About two weeks ago, I just discovered sun protection clothing, so now I'm experimenting with being able to walk at different times of the day, before the hot summer days and poor air quality return.
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I've been quite isolated living here, so far from my hometown. During the pandemic, friends had different types of 'bubbles', not as strict as mine, so they were high-risk to me. Due to the germ-factor risk, we'd have to meet outside. Since the temperature here in this city is 20 degrees warmer then my hometown, (high 90F-100F from spring through to fall) and I couldn't be in full sun, my visits would have had to be around sunrise - which is not optimal. I had only a few visits from friends due to those logistics. During the pandemic, Uber wasn't an option for me, here, because I live so far out of town and with businesses closed there were minimal drivers especially to drive so far. My son would visit weekly, when possible, and that was awesome (to see him, and also to be able to do whatever errands). Since things are now opening, he's back at work, which makes him a risk factor as far as germs and indoor visits and full-time college which limits his availability. (He's been super amazing- so all good energy to him!)
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To get to my specialist or transplant appointments, my son or a friend drives in to get me, then drives in to Los Angeles. That's a lot of driving (two hours for them, each way). I currently can't get to medical appointments with my local hometown team (oncologist, physician, dentist, ophthalmologist), that insurance covers, because that would require someone drive four hours to get me, go to the appointment and back. If Uber or a taxi were viable means, it would cost around $100 each way.
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I'm very much missing local community! I am great at making friends and creating circles, but my main restriction as far as germ management goes, is to not be around people and to not be in indoor public spaces (like someone's home). I'm very much alone, here, and that's sometimes challenging for my spirits, but most importantly for logistics for my daily life. It creates another layer of challenge, that could 'easily' be resolved by moving.
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How has funding worked all of this time? I didn't qualify for disability since I had been self-employed (as a caregiver, and running an online business through which I taught mindfulness through online courses and coaching). (An aside: I closed my business in 2018, pre-diagnosis, and deleted my website right before my transplant to give myself a clean slate.) I didn't want to lose my insurance by running a GoFundMe, then. When I was diagnosed, people donated gift cards, which was helpful. Then, people from my online community and local friends donated monetary gifts of $1k a month. I use that to pay rent, and I charge the rest. (Not wise, because of the rotating fees, but it's worked.)
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I have had a few social workers try to find solutions for me. There are so many loopholes, and cracks, I kept falling through. That's been ongoing since my diagnosis. I share along the way, via a Caringbridge account and social media, to shine light on that. Change needs to happen. Every time I share something about 'falling' numerous people say 'me, too'. This is what I'm in and moving through, and I'm doing the best with what I have and what I'm in.
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My best isn't enough. That's hard to be in. I'm having to ask for support. That's hard as well. I'm a giver by nature and preference, and learning to ask and receive has been vulnerable and a stretch, and also gotten me to this moment. I'm grateful for every moment of good, and wow, the hard stuff is super hard.
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As you can see, throughout this challenging time, logistics have been impossible-feeling; as in, it shouldn't work. And, blessings flow through, which somehow makes it work. It's hard, and it's amazing, all at once. Yes, I wrestle with shame, and doubt and worthiness, because I promise you it feels awful to be homeless and also have chronic illness, and I'm not 'contributing' to society in a way that can be measured. There is judgment about living at a budget hotel. (Judgement from staff and a few people looking in.) But, mostly, there is compassion and kindness, generosity and love. And, I'm grateful.
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I have plenty more healing to do, but also, most importantly, I have plenty more life to live (I hope!, I'm feeling it!). This next step of moving, has been something I've been stuck in for a year, and my mind will tell you it's just not going to happen, but then what? What will all of this have been for? Am I just going to give up? No. So, I'm here, asking for community support, and open to receiving in, and experiencing all of this, with as much joy and wonder and gratitude as possible. Is this a stretch? Heck yes. Oh.my. Am I afraid? Completely. But, how will I open through these restrictions in a healthy and safe way, if I don't do something radically different. Did I ask for enough? Probably just enough. That's my edge. I'm on it.
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Will I ask you to celebrate with me? Absolutely! Every step of the way. Which I'll share. As I have been. (again, as a reflection of what is possible, in the hopes of encouraging someone else, in their own life).
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What if I fail? I mean, I ask myself this all of the time. One perspective is that I'm already failing. The other perspective is that look, I'm here, and I'm doing the best I can in each day, so I'm succeeding. I can't judge myself, because I'm a harsh self-critic. And I don't do well with judgment, anyway. It sounds woo, but in all of this, I'm learning to love myself, and to be seen and allow myself to be loved for who I am and what I'm in. I'm doing all that I know to heal and grow and be present in this day, and learning and questioning and advocating, and giving back in the ways I currently can.
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What will I do when the year sponsorship is completed? From this point, I can't say exactly. I am hoping that being plugged into my local team and resources, will help me to heal further. And, that having stable housing and the peace of mind that goes with that (not having to be on high alert all of the time!) will free up some energy to create with. I am starting over, within restrictions, and I need this step of moving and seeing what opens up from that, to make informed decisions about next steps. This gives me a chance, I don't currently have.
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And, if you'd like to be a part of that - improving my quality of life by giving me a chance I don't currently have - the most helpful form of support is to donate a monetary gift, and to share my fundraiser with your friends and loved ones, so I can hopefully meet this goal. (Unless you have a vacation home to donate for one year; and here in So Ca, many many people do, so that's not an outrageous suggestion!)
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Thank you for reading through this. Thank you for any sort of good energy, prayers, love, you might wish to share. And, thank you for any monetary gifts, and any shares of my request, that you might contribute.
