In The Beginning, There Was Pain
Hello! My name is Autumn Skylar Dolinger. I am 22 years old and have been classified as disabled since the age of 16. Currently, I am a user of a rolling walker for mobility and stability. You may be asking yourself, what happened? Well, allow me to illuminate. It started with a headache. One day in 2015 I got a headache that, to this day, never went away. I was told at the time not to really worry, that it would pass, and that as you get older headaches are more likely to happen. Just be patient. Well, a few months passed, and that freaking headache hadn't gone away, so off to neurologists I went. I got brain scans and they told me at the time that though I have a condition called Arnold Chiari, it wasn't that bad. Spoiler alert: it was actually incredibly bad. Not even a month after that appointment I had a singing recital. It went fabulously and I was so proud, but something felt off. My headache was worse than usual but I brushed it off. That is, until we were on the way to a restaurant to celebrate and I told my boyfriend at the time something was wrong. He then told my parents and we drove home. Within seconds of walking through the door, I began to scream. I cannot even describe to you the pain I felt that day. I was convinced my head was going to pop and I was done for. My parents brought me to the ER and I was admitted. Not long after, they transferred me to a different hospital that was equipped to handle children's neurology. It was there we found out what was wrong. That Chiari the doctor told me not to worry about was bad. If you don't know. Arnold Chiari is a brain abnormality in which the cerebellum tonsils of the brain descend 5mm or more. 5mm is the criteria, keep that in mind. My tonsils descended 28 mm and were getting close to hemorrhaging as they tried to sneak into my spinal canal. I experienced fits of opisthotonos which is very rare in chiari and is typical only in severe infant cases, but given how bad my chiari was my body could not handle what was happening as the cerebral spinal fluid was getting trapped. I required emergency brain surgery and they hoped that would fix me. It fixed some of what was wrong, the life-threatening emergency, yes, but I walked into that hospital and could not walk back out. I developed severe tremors in my legs, balance issues, and general instability. I was transferred to an inpatient rehabilitation center and there they treated me so terribly. They blamed everything on my mental illnesses and even accused me of seeking drugs as I took the pain medication I was prescribed as often as possible. They didn't care that I wasn't even a month out of surgery, they just had it in their minds that I was a nuisance. Even when I developed Bell's Palsy they told me it was just "anxiety" and refused to treat it. I was labeled a head case then and that has followed me. It took a lot of hard work but in about 5 months I was able to transition to walking, then eventually to a cane, and then to nothing. We thought that was it, but it wasn't even close to the end. It was only the beginning
Being Labeled and its Effects
About a year after that first surgery, the cycle began again. Only this time, something else occurred. Something we still have had difficulty in definitively diagnosing but believe to be a functional movement disorder caused by misalignment of my spine blocking CSF flow. I began experiencing nonepileptic seizures 5 to 8 times a day. I was jumping around from doctor to doctor because everyone wrote them off as psychogenic simply because they were not originating from epilepsy. This label made it incredibly challenging to find any doctor to take me seriously as one looked in my chart and they thought they knew me and what was wrong with me. That was all in my head. Eventually, I found a neurosurgeon out of Weil Cornell, doctor Jeffrey Greenfield. He was the doctor who diagnosed me with Ehlers-Danlos Syndrome, a disorder affecting the collagen throughout the entire body, and Craniocervical Instability. It was he who believed the origin of my episodes was structural and related to blockages in CSF flow caused by the instability. I spent months in a cervical collar, something that stopped these episodes in their track and proved his theory. It was after these months I had my second brain surgery which included a revision of my decompression and a craniocervical fusion. They discovered as well, that the reason I did not get better after the surgery I had originally was because the doctor removed too much skull and made the craniocervical instability even worse. After this surgery, I had another stint inpatient at a rehabilitation center, the same as the first time, and even still they treated me poorly. In fact, so poorly that they never cleaned my surgical wound and I had to be taken back to Weil Cornell's ICU to receive 5 different intravenous antibiotics to prevent permanent damage to the surgical site and even to my brain. Luckily it was caught, only because I noticed pus coming from the area. Had I not noticed this, the fiction might have spread to my brain and killed me. Afterward, I progressed but dealt with emotional issues and severe anorexia, something I had struggled with previously. I felt if I could control my food at least I had control over nothing. If I could control my weight at least it was one part of my body I had control over.
From Then to Now
Over those next 4 years, I dealt with relapses in both my anorexia and my mobility and struggled trying to hold myself together. We were so confused, I had the surgery. Why wasn't I fixed? Even my surgeon said there was nothing more he could do as from a surgical standpoint I was fine and that I needed to continue neurological consultations to figure out the final piece of the puzzle. Again, I was bouncing around neurologists as they took one look at my mental health history, one look at the scars from self-harm on my body, and decided that everything was stress-related. But we knew something else was going on. I struggled terribly and with that came episodes of mania and depression which would later be diagnosed Bipolar, and still struggled with anorexia. In January of 2020 I was the lowest and sickest I had ever been. They were so close to putting me under surgery to give me tube feeds through a J Tube, but that threat got me to eat in tandem with ElectroConvulsive Therapy. I survived and gained back 50 lbs but then COVID hit. I was so scared and lonely and out of my gourd. A man took advantage of that and took advantage of me on numerous occasions. I thought he was my friend and this destroyed me. Months after this occurred, another physical relapse took place as well. My partner and I lost friends to this man's lies and with that, I lost hope in everything, including getting better physically and mentally. But then, lightning struck. I found a neurologist who looked at my brain scans and saw something I had been begging doctors to look into, bright spots aka lesions. At first, we ruled out MS, and then came the blood tests for autoimmune disorders that cause lesions in these areas, and we found they indicated one condition: Lupus. As odd as it sounds, all of these conditions I have mentioned as well as the numerous others I have not included in my story all connect through a web. Doctors are still trying to find out. You are more likely to have the conditions I have if you have Ehlers-Danlos Syndrome. So, while I am now currently fighting to get off of my walker I am also in the process of seeing a rheumatologist in June to definitively diagnose me with Lupus and begin treatment. All along, there was something else. Something that fed off of the emotional and medical stress my body was under and caused these relapses. Many don't know this but Lupus can cause relapses and remission very similar to MS. My presentation of relapse is the instability of the legs, leg tremors, balance issues, and weakness all from a neurological standpoint. In rarer cases, Lupus can cause this. Now I am working with doctors to get better and get back to a cane and then to nothing. My ultimate goal is to become an advocate for the numerous conditions I have and to rise as an actress and singer, and every day my goals grow closer to completion. Conditions I have not mentioned but also related to Ehlers-Danlos Syndrome: Postural Orthostatic Tachycardia Syndrome, Sleep Apnea, Asthma, GI Dysmotility, and Interstitial Cystitis.
