The Dark Side of Stiff Person Syndrome I Never Talk About
Though I acquired SPS at the atypically young age of 16 due to genetic and epigenetic susceptibilities secondary to the HPV jab, there are some parts to the disease that are well, deeply embarrassing as an individual in their mid-20s that should be living in the prime years of their life. Well, I have some skeletons in the closet. I’m about to dust them off and bring them out. Meet some of my greatest insecurities.
1. Being unable to work and having to rely on the Social Social Administration for support/“What do you do for work?”
This one bothers me something special. I cannot stand this question at this part of my life. There is absolutely nothing wrong with asking it, but it definitely stings. I so badly want to work, but working even a part time job will jeopardize my opportunities to not only stay on Supplemental Security Income (SSI), but more importantly, it would threaten my Medicaid eligibility and insurance is something I personally use multiple times in a week alone. Without insurance, I could probably bankrupt my family in a month easily. I will be turning 26 soon and I have already filed the paperwork that will hopefully allow me to stay on my father’s insurance until I graduate with my master’s degree in two years where I have to carry my own insurance. Also, I rely on my parents way more than a 25-year-old should, but in this season of life, I do not see a “Plan B.” I know I am not a burden and they do everything with love, but sometimes, I feel so trapped in my dysfunctional body.
2. Sometimes, I grieve what I, as a human being, believe should have been or you could also say “I long for my ‘old life’” even though this has always been the life planned for me by God.
My faith is a big part of my life and God and I have been through some storms where I was not interested in speaking to Him in prayer. However, my heart grieves for what should have been, what should be, and for the individuals that will never pay on this side of Heaven have done. A mistake is an accident. We’ve been poisoned by the HPV jab globally since 2006.
This is bigger than me. The world will never understand how Gardasil’s pharmaceutical greed could rip my life, the lives of those I have prayed for/with, the courageous families that never gave it up in court (in fact, lost money), and most horrifically, the people that will never the know the truth of the danger because their child’s life was stolen first. This is not a mistake. It is a power play by Big Pharma and evil. Pure evil and greed.
Women to 45: You are NOT SAFE!
Boys to 26: You are NOT SAFE!
I thank God each day my brother will not have to experience this pain prematurely if there is a genetic susceptibility. God made me the big sister and part of that, is taking the sucker punches and finding the traps, so he will not have to; although, deep in his eyes, I see the pain that I am powerless to stop. I know my brother’s chances of getting out of his 30s hearing without implants are genetically slim. As a big sister that has done it three times, I have promised to jump with him when we get to that bridge. When he is finally ready. I am my brother’s keeper and I never want him to needlessly suffer.
My pain of my parents is searing and I see it daily. I know my mom would turn back the clock if she could. My dad would have laid down his life to give me a shot at “normal.” Every time I come home from the hospital, he comes and finds me, just as he did when he got home from work when I was a small child to hug and tuck me in.
I was sitting on a floor struggling to make my post-ICU, drugged-up, post-intubation brain work to write three papers this week, because it was closer to the wall outlet I needed to charge my computer to finish my first year of my MSW. Yet, I feel privileged to be working on such a degree when other chronically ill individuals and members of the “Gardasil Generation” cannot.
My heart is grieved for those that will die a preventable death from causes not all that different from my conditions. My life-changing jab cost that everything cost me (not everything, but a lot) $400 (that was my doctor’s kickback) and millions Lord knows insurance has paid over 10 years. It has not always been bad, but I’ve seen the evil. I’ve seen the death. I’ve been the one wondering if it is my time too?
-51% of parents choose to teach safe sex practices to their teens.
-49% decide on the jabs. I will never judge someone who has done their independent research, even if I don’t agree. That is a matter of free will that should be given free to all parents. The CDC is not happy with those statistics though and has been pushing it more and more on pediatricians “because we are “behind” pre-pandemic numbers.
Regardless, good outcome or worst-case scenario, I’ll cry with you. It’s not about being “correct” all of the time. Sometimes, it’s about being a human. A decent human that has seen what can happen when “science” goes sideways. I’ll cry with you. I’ll help find resources, but I promise to never kick you for your decisions.
The biggest defender of the “Gardasil Girls?” We don’t see eye to eye politically. It’s not a partisan issue. It is about humanity. In fact, he and his colleagues stand on two different sides, but one this they can agree: Gardasil has poisoned a generation and counting.
God bless the people of this country and this world. Words escape me, but what I would do to change one thing. $400 USD I’ve paid with my body and an neuroimmunological disaster God is unlikely to take away. I can’t think of what I wouldn’t have done to pay that fee.
I’ll never claim to know it all or experience it all, but if my words save one life from being like mine, it will be worth all the difference.
In my heart, I’ll forever be frozen 12 days after my 16th birthday. 08/24/2012 to the -. That — is what I pray God will reveal in due time. The bar that represents my life and everything I do in it.
***This is not an anti-jab campaign. My parents were both conventionally trained in medicine and I have been fully inoculated per CDC guidelines until the day that Gardasil entered my life; receiving one of 3 doses of the original kind. “Extra-Strength” Gardasil-9 is still considered “recommended “by the CDC although it is becoming a state job to mislead a sixth grader into receiving a jab for which they have no parental consent to “prevent cancer. New York State and California have lead the way.***
3. Constantly feeling like I am “too sick” for a romantic relationship
Yep, 25 going on 26 and I have yet to have a friend that was more than a “guy friend.” I have fun with my guy friends, but let’s be real, I am definitely looking forward to the first time that I let my guard down enough and I am healthy enough to date. Ski trips, trips to the movies, and going to haunted houses have been fun, but they have been just that fun and not serious in nature. As I joke, “It’s not my fault that I spend more time on MyChart than Tinder.” Not that I would use Tinder to find a date, but you get the point.
4. Constantly minimizing my symptoms because I do not want you to feel bad for me or seem like I am always complaining
I minimize my symptoms daily. I try not to think about my symptoms, even when I literally want to punch something from the pain. I will lie and tell you “I’m great!” with a smile before I tell you about the latest hospitalization, that injury from spasms, that unexplained increase in fatigue, my rollercoaster blood sugar levels, the pain I am experiencing in that moment, or the spasm attack that had me contorted in unnatural positions with a side of absolute agony I had earlier in the day. It takes a lot to bite my tongue and act like nothing is going on. In reality, I don’t want to hear myself complain, nor do I want other people to hear me complain. I was taught growing up that you never talk about the pain, because the pain is not treatable and the more I focus on it, the worse it will be. While there is some truth to that, bottling up all the pain and emotions with no outlet isn’t healthy either. I learned this method during an inpatient pain program and the other patients and I were so good at suppressing our emotions that the physical therapists somehow managed to break BOTH legs in ONE PATIENT completely. The tibia and fibula were both fractured. He was shamed for needing a walker and they still made him go to therapy for days after he sustained the injuries. Needless to say, those pain programs are dangerous and mentally toxic. I am unable to cry in front of other people because of my experiences in that rehabilitation facility for ten days. It took ten days to alter me psychologically for life and that was ten years ago now.
5. The impact that mental health has on physical health and vice-versa
Because many, if not most, patients with SPS are deficient in the neurotransmitter GABA and the antibody GAD65 is GABA-synthesis limiting, there is not enough GABA to go around. This means that not only can GABA not inhibit neurotransmission, but GABA is the body’s natural anxiolytic. Without enough GABA, most people have some level of anxiety. Anxiety always makes physical symptoms worse. In the case of SPS, many people end up estranged from family and friends, which leads to an increased amount of depression. Both anxiety and depression can wreck havoc on the body, but most anti-depressants are contraindicated for people with SPS, because they can worsen the same spasms that contribute to the depression in the first place.
6. Life is not a race, but I feel chronically behind
At 25 years old, I’ve never been on a date, I am still 2 years out from finishing graduate school, I spend more time with people twice my age, because the ones my age, I only know from online. I finished my bachelor’s degree at 22. I moved states with my family on my 23rd birthday. My friends and taekwondo family are in PA and I am stuck in SC in the midst of a global pandemic. I am an immunocompromised individual living in a global pandemic. We moved just in time to lockdown for 18 months and I really did not get to meet anyone or get to know the Aiken area, because of the lockdown and my extra layer of vulnerability being immunocompromised. At this age, I should be done with my MSW and in the workforce so that I can apply to PhD programs, because the plan has always been and continues to be “Dr. Bayer.” I am limited by my institution of higher learning, because they do not have the staff to oversee graduate students not doing their capstone course conduct research. It seems like no matter what I do, I am seen as a “wannabe researcher,” when research is my passion. I feel behind in my taekwondo training, because I am so far from my instructor and both parties are very busy. I still think about it just about everyday though, but life goes on. I feel like I always have to position myself and others for success. In school, I work as far ahead as I can. Not only am I trying to position myself for success, I am trying to position my peers to be successful in the event that I end up having a medical emergency and end up in the ICU. I live my life as if there is going to be a crisis somewhere at any time and that mentality slows you down. I guess the good thing is that dreams and goals do not have an expiration date. I suppose I should be thankful for that.
7. Worrying about posting my "good days" on social media out of fear that people will assume that it's my “norm”, or that I am better
This is probably going to surprise some people because of the very, very open book and public approach I have taken regarding sharing my experiences with all of my conditions and diseases from very early on, especially as it pertains to Meg’s Miracles, the mainstream media and social media. Even when I am dealing with the media, the media always latches on to the things that would make people think that I am not “that bad” or that “SPS doesn’t pose a threat to me,” when that literally could not be further from the truth. This condition has tried to kill me more times than I can count. The PCA malfunction that led to the respiratory arrest in 2013, severe malnutrition in 2016, the multiple misdiagnosed seizures I had in 2016, polypharmacy of the most absurd kind in 2016, acute metabolic encephalopathy that put me in status epilepticus that left me in a coma at the Mayo Clinic for 11 days in 2016 that had effectively crashed my autonomic nervous system, blood sugars (both high and low that are “incompatible with life”), spasming so severely that I need the respiratory support of a ventilator, accidental drug withdrawals in the hospital, busted feeding tubes that did not allow for the administration of medications, and oh, the list could go on. I feel like many people think that when I can do just a little bit more, push a little bit harder, or do something that is a little more extreme than what I normally do, I am better, not as bad, or stable. I rarely feel stable. Stability is a feeling that is elusive to me, but can you blame me? The last 10 years of what should be some of the most formative years have been crisis after crisis after crisis. That completely messes with you from a sociological and psychological perspective. When your body is screwed up, just about everything else in life gets screwed up too and that is just the nature of the beast.
8. The treatments, the doctors copays, any supplements, assistive devices, alternative therapies, extra accommodations of many kinds, hotel rooms, travel expenses, medication copays, insurance, and more. It all adds up and it is unbelievably expensive.
I have been well insured over the course of my life, but let’s be real. There have been many, many things that insurance either didn’t cover or doesn’t cover. In addition, I always have to hit my deductible and out-of-pocket maximums for insurance, before everything else for the year goes to zero dollars. It never takes me long to hit that amount, because an uncomplicated weekly IVIG infusion alone is $12,000. If I react to the infusion, that cost jumps to $15,000 easily. Don’t forget, the monthly premium still has to be paid like everyone else’s insurance. Alternative therapies that really help me like deep tissue massages can cost about $120 a visit and I wish I could say the relief stuck around. It never does for long. It’s really a mental and 2 hour respite before everything locks up again. Insurance pays nothing towards travel expenses and the hotel rooms we need when we go out of town for a doctor’s appointment. That is $120-$200 easy a night and don’t even get me started on gas and flights. Having a conditions as rare as SPS from a young age has required me to travel all over the United States to use doctors that I always hoped could help me. I’ve had more disappointing appointments than ones that called for a celebration. I have been in the OR well over 100 times in 10 years and I’ve been admitted to the hospital (generally in the ICU) around 80 times. The cost of that is well into the millions. I am someone an insurance company most definitely does not want to insure. I don’t even bother looking at the EOB (Explanation of Benefits) anymore. I pay the bills as they come in and hope for the best, but looking at the EOBs is just another source of stress.
9. Getting in my head during spasm attack…
During minor, partial body attacks, I try to send myself to some of the most picturesque places I’ve been on earth. Maybe I am doing my martial arts form in my head. The most perfectly executed form I can possibly see myself doing. Typically, I am able to get myself medications to stop or slow the attack. During the massive spasms, all bets are off. I’m not one to cry and scream because that makes the spasms so much worse (and I normally cannot breathe or speak so that is scary). Honestly, I just wait. Wait for a rescue dose of meds and sometimes, that never comes. Wait until someone realizes I’m in trouble, but sometimes, no one will realize it and it’s just God and I. If I’m going to be by myself, I’m glad that God is there with me.
10. Where science is now and “clinical remission”
I just recently saw what is defined as the “clinical remission” for the first time recently. With SPS, it is defined as “not getting worse.” The antibodies will probably still be present, people still need daily, weekly, and monthly treatments of drugs, IV therapies, and non-pharmacologic therapies. No FDA approved treatment specifically for SPS exists. Even when I get to stable, I will still have work to do. The fight isn’t over. It’s just started once you’ve found that treatment regimen. For now, there’s no end in sight, but I hope, pray, and trust that God has this all covered and figured out, even if my doctors and I do not. You know what they say about faith. It’s walking trusting God is there, even when you cannot see a thing.