I lived most of my life in pain — thirteen years, to be exact. From the ages of 15–28, I lived with a debilitating spine disorder called Juvenile Disc Disease. Basically, a degenerative disc disease that is quite uncommon in anyone under the age of 50.
I was kicked off of my parents’ insurance plan (not their doing) as soon as I graduated college at the age of 22. I moved out to L.A. with hopes and dreams that were quickly dashed as my health continued to deteriorate; I needed to hold down a steady enough job so that I could procure health insurance. I had to put my career in the entertainment industry on hold. For a long time.
(This was all well before the ACA, or “Obamacare”, which would have been extraordinarily helpful for someone like me back then.)
In that time, I was subjected to steroid injections, epidural injections, trigger point injections (of which you don’t get anesthetic for); all the opiates (because that’s what they’re peddling), physical therapy, acupuncture, and even the option to “freeze” my nerves. I opted out of freezing my nerves as a last ditch effort to control the heaping amounts of debilitating pain I was in because you don’t receive any anesthetic as they jab a giant needle into your back to try and find the nerves they need to freeze. When I asked my back specialist (at the time) about people’s reactions he simply replied, “They get up off the table and leave. It’s too much pain.”
I believe I was 24 at the time.
When I was 25, I ended up with stroke-like symptoms and found out that I have a small tumor on the speech center of my brain. I get it checked out about once a year and I’ve named him “Bob”. Bob is benign, so we can forget he exists (until I’m very stressed and he affects my speech).
Throughout all of this, I had a hard time holding down more than one job at a time. If I did, the second job needed to be “easier” on my body, but I’m quite the team player and would push through the pain like a fucking champ. Sometimes, I’d hold down 3–4 other side hustles like selling my panties or dirty socks. Not the smartest of decisions but pride is mighty, friends.
I ended up on disability for a bit after I tried serving as a second job. It was way too hard on my already fragile body. Ultimately, I had to just have my one job at Sees Candies because I needed the insurance. However, I couldn’t work enough to pay all of my bills and had to rely heavily on my credit cards. I’m not saying I was a saint with money — I definitely bought things I didn’t need with credit cards — but the bulk of my spending was on food, gas, bills, and medical bills. I didn’t know that medical debt could get wiped away, instead relying on grants from hospitals for ER stays and procedures to bring down the amount owed. Sometimes it worked, sometimes it didn’t. Insurance helped, once I was at Sees long enough to get it, but it wasn’t a failsafe. Copays were high, costs were high and I couldn’t cut it.
Medical procedures add up.
When I was 25, I had the spine of a 65 year old woman; arthritis, most of my spine was bone on bone, and what discs were left were slipped or bulging by the age of 28.
When I was 28, I had stem cells from a clinic in Hollywood. I was at the point where I could barely stand for more than an hour or two. I was in so much pain on a daily basis, I actually don’t know how to put it into words. I was flaking on everyone; I had to finally reveal my health problems and I’m pretty sure my flakiness was detrimental to me as an actor in this business. But, I could barely stand, let alone walk without a cane, so…
For the past five years my life has been relatively pain free. I cannot explain to you the gift that has been. I wouldn’t trade it for anything. Nothing. The gift of not being in a wheelchair, of not having to have constant medical procedure “bandaids” unleashed on me has been extraordinary. However, not all gifts last forever, and as I have mentioned, albeit a bit quietly on social media, my spine disease has come back this past year, and in full force: Two of my discs are already “dead”, three are bulging, one or two have spurs on them, and one has slipped so much this past year (even once while I was sleeping) that if it slips again, I could become paralyzed.
I’ve been taking my time to process this.
This has felt like a death sentence, because I have worked so hard to get my body fit and healthy. I battle a lot of mental health problems (can you really blame me?) and two of the big ones are disordered eating and severe depression. Being able to workout, even in my most suicidal of episodes, has saved me from completely destroying myself.
I’m so proud of how I look and how I’ve managed to keep up healthy eating, too, even in my most depressive episodes. Do you get how difficult that is? So, if you see an uptick in photos of me celebrating my own body positivity and the fact that I don’t hate how I look anymore, the following is why, because I’m about to lose everything I’ve worked so hard for, for a long while:
I now have to have surgery on my spine; basically a spinal fusion where they will remove the shit disc, replace it with hardware, and then I’m out for the count for a long while, while it fuses together. You’d think I’d be happy, right? Yay! She’ll be out of pain again!
This surgery is the start of more surgeries. I’m really lucky I’ve become so healthy, as it will help to ward off the disintegration of my other discs for a few extra years, but the pressure that will be put upon the other areas of my spine, now from the fusion, will cause those other discs to eventually slip, and then I will need to have them removed before they could paralyze me, too.
My surgeon said to me, “This is as good as your ever going to be, again”.
I’m sure he was just stating the worst case scenario (fuck, I hope so), but for someone who running has become synonymous with “freedom”, to have that taken away AGAIN, is… devastating. To be trapped in a body that doesn’t work right AGAIN is… devastating.
It’s safe to say that I’m scared.
If you know me, you know that I don’t want your pity. Fuck that. Don’t tell me how sorry you are for me. The fact that I continue to bare my picked-through soul in the interest of mental health, should show you how strong I am. I don’t want your money, because I work for my money, and while I can’t work much because I can’t stand all day, or sit all day, or lift now, I will find a way.
I’ve been working so hard to try and get jobs in my industry; I had help getting some office PA work (I’m so grateful to this woman!) and I loved it. I’m too old to have “starter” jobs and I’ve had to weigh output vs. input very heavily this past year. I need to be happy with what I do, because for some reason, mental health takes a toll on me more than most — ADD, depression, and anxiety are very real, friends.
I may not always have the strength, but the strength somehow always finds me.
I’m a fuck-ton stronger than I think I am at this point. I’m a strong ass woman who has been through more shit than most, so while I am angry and sad and a myriad of other finite emotions, I have to remind myself that things could also always be worse. I may have had a really hard go at adulthood (sexual assault, spine disease, brain tumor, severe depression, disordered eating, suicide attempts, financial destitution, just to name the big ones) but I can still walk right now. Some people don’t even have that.
That gratitude is not lost on me.
And while it shouldn’t concern me, I know of some people that have been wondering how I’ve been in such a state of financial ruin for the past few years — well, does that explain it? When you lose your twenties to medical problems, and you can’t work enough to pay your bills, you end up in consolidation (not bankruptcy because that costs over $7000 to go bankrupt); and in consolidation you battle lawsuits from collection agencies and all your money still goes to the bills you’re having a hard time paying, because when you’re poor, especially from medical problems, especially so early in life that you haven’t had time to build up your funds, you pay out for the rest of your life. I don’t know what a vacation is like, I haven’t had one in almost four years. I don’t know what “fun” is most of the time, but I am lucky to receive some cool, free activities and I’m so grateful to those people who give those opportunities to me. If I want to go out to eat or buy myself a drink, I fret about when I’m going to be able to make that money up. If I need new clothes or shoes, I don’t know where that money is coming from. When I have a good paying gig, I have to stock up as quickly as I can and pay past bills as fast as I can and then, by golly that money is gone and the job is done and I’m right back where I started. Broke.
And sometimes… almost homeless.
Moving back “home” to my parents isn’t a viable option, despite their insistence, because then I won’t have any job options, any friends, and if I miss my consolidation payments those agreements become null and void and I’ll end up in court and then possibly jail.
Because I had/have medical problems.
I have pulled back from everyone and everything this past year, because living your life costs money. And when you’re in the predicament I seem to constantly be in, you just have to watch it from the sidelines. I’ve made a choice to live in an expensive city because this is where my life is; this is where I feel at home; this is where warm weather is for my arthritis; this is where my career wants to be. I’m a creative and I’d downright shrivel into non-existence if I had to work in an office or a factory for the rest of my life (nothing wrong with it, but I cannot do it mentally or physically).
I also have a lot of unfinished business here in L.A. and, apparently, I don’t back down from a challenge.
And this past year I’ve had to hide, even from myself, that my physical health was failing, because my mental health has deteriorated to a point where I went through my second nervous breakdown.
This is what the ‘chronic illness and poverty’ cycle looks like.
This is America.