MollieKatie's Handicapped Apartment
Most of my former classmates, friends, and family members are currently following the usual life plan. There have been a smattering of bridal showers, the hoopla of weddings and, with each new baby, a shower to celebrate. While I am ecstatic for them, I have had to come to terms with the fact that this will not happen for me; After extensive discussions with my doctors, it has been made clear that due to my disability and other medical conditions, these things are no longer physically possible for me. I am hopeful that people will view this GoFundMe in the same spirit they would an engagement, wedding, or a new baby -- that I’m embarking on this big important new phase in my life, and this is their chance to wish me well, while being a part of it.
I’ve set up a more detailed Q+A below. If you have any questions, please use the form that GoFundMe provides at the end of this post, and I will be happy to answer them.
Q: Who are you?
I’m a passionate fan of Boston Red Sox baseball, I love reading and acquiring random tidbits of knowledge, and I will never say ‘no’ to a movie that stars Angela Lansbury! My future career goals once included becoming librarian. (As an undergraduate student, I worked for over a year at the Mount Holyoke College Library's Archives & Special Collections and fell in love with being a history detective.) My emotional support therapy cat, Miss Rita Hayworth, brings so much joy and purpose to my everyday life.
Q: What happened during your sister’s latest assault?
On September 2nd, 2016, I attempted to cook something in the kitchen; My sister refused to allow it unless I agreed to wash my dirty dishes immediately afterwards, which is something she knows I am physically incapable of doing because of the extreme 10 out of 10 pain it causes my low back, which is where my degenerative disk disease is the worst. I called 911. The police arrested me because my sister had visible injuries -- a tiny cut on her forehead from her glasses pinching that spot, and a bite mark on her back, which occurred when she threw her back into my front, sending me slamming back-first into our metal deck door (my bite did not break the skin, it was just enough to startle her off me so I could get away because both my arms and legs were pinned) -- while I had no visible injuries. My repeated requests for an ambulance were denied. My experience with the police department was so overwhelmingly bad that I do not feel safe elaborating on that any further.
I spent the next 5 days in the hospital because I was unable to walk. (On a normal day, my legs go numb from the waist -- right where my worst injury sites are -- down, lasting an average of anywhere from 20 minutes to 6 hours. The longest they have ever gone numb is 27 hours, which is just over a full day. But the trauma of my sister’s assault was enough to make me lose feeling in my legs for 5 whole days. That has never ever happened before.) The doctors confirmed that I had a concussion, as well as new damage to my back -- the disk at L2/L3 is now bulging and pinching a nerve, causing brand new associated lightning-strike nerve pains running down through my back, into my previously-injured hip, my butt, and my thighs, especially on the left side of my body. (Before now, the worst pains were all concentrated on my right side.)
I returned to the hospital on September 28th, 2016, where I was diagnosed with post-concussion syndrome, because I had been having blackouts where I would do things (mostly sleep, but sometimes send e-mails, tweets, and text messages to friends -- it’s really scary to wake up in the middle of a conversation you have no memory of starting!) and just not remember them. The symptoms from that -- a constant headache, slower thinking and speech, and physical skull tenderness in the spots where I was hit -- will most likely last for six months, according to the doctors. I am hopeful they have now correctly predicted that timeline, since when I left the hospital they initially said this would all only last one month!
My mom refuses to publicly acknowledge my sister’s level of abuse. Doing so would help me in my legal case, as well as mean a great deal to me personally. Yet, she doesn’t. Given the history of her continued denial and outright enabling of my sister’s abusive behavior, I have decided to end our relationship upon my moving out. I feel like this is a healthy first step.
(To be clear: I'm not asking anyone reading this to stop being friends with my mother or my sister. Your relationships are your own to have or have not. In future group social settings, I have no problem being polite and friendly to my mother, should she also be in attendance. However, I am asking that people do not invite me to the same event as they invite my sister to, and vice versa. For extended family holidays, it is my hope that we could alternate -- Sara attends Thanksgiving, I attend Christmas, then next year we swap occasions. For my own physical safety and mental health, I simply cannot be in the same room as my abuser -- my sister Sara -- ever again. I would hope that my extended family could honor that one request. Or they could choose to simply not to include me in any future family events at all. To lose the only extended family I have would make me very sad, but it is an outcome that I have had to emotionally prepare myself for, because it is a relatively common reaction when people disclose familial abuse.)
Q: How are you ‘disabled’?
I have degenerative disk disease in my spine. Over the course of six years, I had three separate back injuries to two different discs (L3/L4 once, and L5/S1 twice). The final, disabling injury to my back came in February 2010, when I was just 23 years old. These traumas triggered the degeneration of the remaining discs in my spine. At the start of my journey, back in 2006, I was 5 feet 11 inches tall. Today, I am 5 feet 9 inches tall. This damage is irreversible. I will never get any better than I currently am. I can only hope to stay at this level and keep from getting worse for as long as possible. It’s all in the name: the word ‘degenerative’ in my diagnosis of ‘degenerative disk disease’ quite literally means ‘progressively getting worse over time.’
As a result of these injuries, I cannot sit, stand, or walk for more than 15 to 20 minutes without experiencing excruciating pain. I really only leave the house anymore for health necessities, such as doctor appointments, pain management treatments, and pharmacy visits. On these errands, I require at least a cane...but lately, I am having to rely more and more on my walker (especially on trips to the grocery store, where long waits in line are the norm). I am at risk for falls. My back brace has gone from something I only need on day-long outings to a constant. Before I leave the house, I have to prepare for at least an hour with my heating pad, TENS unit (which delivers tiny electrical shocks that help break up the knots in my muscles), physical therapy stretches, and every medication in my arsenal. I absolutely hate the way narcotic painkillers make me feel. I used to only require them on days I left the house, but over the past few months, they have become an everyday necessity. Pushing myself on a two hour trip requires 24 hours straight spent sleeping to recover (sleep is when your body repairs itself); An all-day adventure costs me a week of my already severely-limited functionality. Although I try my best to remain optimistic, this ratio and the constant chronic pain that I have to endure has done a number on my mental health. Dealing with depression, anxiety, and panic attacks on top of my physical impairments alternates between overwhelming and exhausting, though I am lucky to have my emotional support therapy cat, Miss Rita Hayworth, to help me cope with the worst of it.
More side effects of my disease include, but are not limited to, the following:
- Every day, everything below my waist (right where my disk injuries are concentrated) goes numb for an average of anything between 20 minutes and 6 hours. (My current record is 27 hours straight!) As a result of this numbness, I often lose control of my bladder. It’s incredibly demoralizing to be 29 years old and having to shop in the same ‘bladder protection’ aisle of the grocery store as people old enough to be my grandparents.
- On Easter 2011, my legs went numb and everything below my right knee stayed numb. (To cheer myself up a bit, I like to pretend I’m just wearing a baseball player’s high sock, since the permanent numbness follows that exact same shape.) My doctor ran a few tests, which indicated that the nerves themselves were normal and healthy, but there was a problem relaying the messages were sent back up my spine, past the injured disks, to my brain.
- The disk at L3/L4 is only ruptured, but the disk at L5/S1 is both ruptured and herniated. It doesn't touch my spinal cord, but it sticks out close enough to irritate my entire nervous system. (Remember that annoying game kids used to play, where they’d put their hands really close to your face and repeatedly chant "I'm not touching you" until you got mad and swatted their hands away? Like that.)
- My legs and arms twitch. The longer I try to grip something through the twitching, the more numb my hand gets. This makes writing and typing very difficult. When combined with my problems sitting, this makes finding employment in a computer-based work-from-home job impossible.
- The pain medications I take make it incredibly difficult to concentrate and make long-term memories.
Q: Isn’t the government helping you?
At the time I sustained my permanently-disabling back injury in February of 2010, I was a semester and a half shy of graduating from Mount Holyoke College. Unfortunately, due to my history of illness and injury, I did not have a long enough, consistent enough work history to qualify for Social Security Disability Insurance (SSDI). This pays you a percentage of your previous job's rate, so even though I was only making a few dollars over minimum wage, it still would have paid more than what I have now, which is Supplemental Security Income (SSI). When the average person says they're "on disability", they usually mean SSDI. For my purposes here, I'm referring to SSI. I currently live at home with my family, so SSI assumes they’re helping to support me financially, because I do not pay enough in monthly rent to my Mom to cover my fair share (one-third) of the mortgage.
Every month, I receive $575 in SSI benefits. Should I transition to living on my own, those benefits would increase to $733 a month. For me, this difference is monumental.
After paying my monthly rent to my Mom and my other bills, I have about $100 left to cover my out-of-pocket medical expenses, plus all my other needs.
I am allotted $194 a month from the Supplemental Nutrition Assistance Program (commonly known as either SNAP or just ‘food stamps’), which is the maximum for a single person.
While I am incredibly grateful for the support the government has given me during this tough patch in my life, it will not be enough to sustain me in the future. I am often at battle with my feelings surrounding the issue. I’m so thankful for what I’ve been given, yet upset that apparently the government and my fellow citizens value me (and fellow disabled people in my situation) so little that not only am I living in poverty now, but I will stay living in poverty for the rest of my life unless the laws surrounding SSI are changed.
(Any person who made and income of less than $11,770 in the year 2015 is considered as living in poverty . In 2015, I received $575 per month on SSI; Meanwhile, the maximum amount for a single person on SSI was $733 per month . Therefore, in 2015, I received a total of $6,900 in SSI benefits, which is $4,870 below the poverty line. If I had received the maximum, I would have gotten $8,796 in 2015, but that still would have fallen $2,974 short of the poverty line. Between 2015 and 2016, there was no increase in SSI to account for inflation.)
In Western Massachusetts, where I live, the rent for an average studio apartment is about $550 per month, and the rent for an average one-bedroom apartment is between $700 and $800 per month. So until now, living at home has not been a choice, but a simple mathematical necessity. I decided I would rather risk my sister’s average of twice-yearly physical assaults than have to regularly play Russian Roulette with my medical necessities because I was spending all my money on housing. I could not afford to move out without government assistance, which is why I am so grateful to have qualified for the Advanced Housing Voucher Program for disabled people.
Q: Where did all of your own money go? Can’t you just use a credit card or something?
For a few years after that 2010 back injury, I held on to the hope that I would return to ‘normal’, the way I had after my first two back injuries, I just had to find the treatment plan that worked for me. My doctors and I tried tons of different medication regimens, several different types of physical therapy, aqua (swimming pool-based) therapy, Swedish massages, reiki, acupuncture, seeing a chiropractor, etc. Nothing provided me with more than a week of medium relief. I consulted five different surgeons about correcting that troublesome disk at L5/S1, but none of them could help me. To cover the cost of what my health insurance did not (which is everything after aqua therapy on the list above), I burned through what little money I had saved from my college work-study job as an archives library student assistant, and I maxed out my credit cards. I thought that I would be able to pay down the balance once I returned to ‘normal’ again. This, obviously, did not happen. Thus, the story of how I ruined my credit score, went completely broke, and became unable to pay any bills whatsoever! Right now, I only have a debit card, which means that I can’t buy the things I need unless I already have the funds in my checking account to cover the full cost.
Q: I can’t afford to donate. How else can I help?
Please share my GoFundMe across all of your social networks with the hashtag #ByGollieHelpMollie! Adding a personal comment to each share, indicating that you know me and that I am genuinely disabled and in need of help, and not a scam artist, would be even more effective just than a plain share without comment. (I know on Twitter that original tweets are far more effective fundraisers than simple RTs.)
Finally, I would be amiss to not say thank you for making it through that wall ‘o text. It’s a lot of information to take in! I am truly appreciative for all the support I have received from both IRL friends and those forged through the interwebs. Any efforts to help me, whether monetary or through spreading the word, are an unbelievable gift. After typing this missive, it seems odd to say that every small act of kindness leaves me speechless. Yet, it truly does. Thank you, thank you, thank you, thank you.