Daarina: From Trials To Triumph
From Diagnosis to Triumph: A Survivor's Journey Through Moyamoya Syndrome and Mental Health
My name is Daarina Jefferson, and my story is about how I survived one of my biggest challenges to date: living with moyamoya syndrome. Before I begin telling you my story, I want to share that I’m a wife, mother of two, and grandmother to one precious baby girl. I’m also a survivor, and here is my testimony.
The date was June 23, 2019. I woke up feeling unwell. The right side of my head felt numb, and I remember that I kept “fanning” that side of my head. My husband took me to the ER, where the doctors ran tests. They said that I had experienced a transient ischemic attack, which meant that I had suffered a mild stroke. I followed up with my specialist, who referred me to a neurosurgeon who was excellent and would eventually help me, as I will explain.
On July 21, 2019, I suffered a second stroke. I remember being in the hospital and being told that I had moyamoya syndrome. For the next year, I traveled to New York twice to see a neurosurgeon. I felt that I was being given the runaround and that no surgeon wanted to take my case. I felt defeated and believed I would have to live with moyamoya syndrome for the rest of my life.
Then COVID hit us hard. My mental health took a hit, and I was spiraling out of control. My husband and I got into a fight, and the next thing I knew, I was in the hospital. He said that I needed to get help, so I was admitted to a psychiatric facility.
In March 2021, I was an inpatient at this horrific facility! The things I witnessed there and how scared I was… Wow! I remember one of the first responders who came to drop off a patient taking me on a gurney and transporting me to another facility! I remember being scared, crying, and saying to myself, “Why me, God?” Later that afternoon, I was brought back to the original psychiatric facility.
My “aha” moment came when one of the aides told me that just because I had a court date didn’t mean I couldn't go home before then. That was when I decided to put in the work and show myself and the staff that I was stable enough to go home.
On April 15, 2021, I was discharged from the facility.
In the summer of 2021, I received a phone call from the original neurosurgeon, who asked if any surgeon had agreed to perform my brain surgery. I said that no one was willing to take my case. He then said that he and his team would perform the surgery. I was so grateful, yet nervous at the thought of having my brain operated on. At that point, we began running tests to make sure I was medically cleared for surgery.
The date was December 17, 2021. My surgery was scheduled for 7 a.m. My husband and I arrived at about 6:30 a.m. Once I was prepped for surgery, I was wheeled into the OR. I remember being put to sleep, and when I opened my eyes, the first thing that hit me was a cold sensation on my head. I had been told that my hair had been shaved off. The surgical staff was removing a tube, and I kept gagging on it. Finally, the tube was removed.
I was wheeled into the Neuro ICU, where I spent the first two days recovering. My mom came to see me and took some pictures. The staff said she couldn't take pictures, but I told them it was okay.
After those two days, I was transferred to a room that I shared with another patient. Although I should have stayed there to recover for the full week, I had to be discharged abruptly because of the rise in COVID cases at the hospital. My mom came, picked me up, and took me to her house to complete my recovery. I was determined to get back on my feet because of my daughter, Taylor, who was in kindergarten at the time. I felt that time was of the essence.
Every day, I found the courage to get up and move around. Mind you, this process took place during my daughter's winter break from school. When it was time for her to return to school, I was ready! It wasn't easy at first. Keep in mind that I had just undergone surgery, and we were still in the middle of the COVID pandemic. I was also still getting used to having my hair completely shaved off. It was my husband's idea to have my hair shaved. When he told me, I was hurt, but I understood why he had made that decision.
Next came the follow-up process. First, I had angiograms. They weren't too bad, just a little uncomfortable, but I handled them with grit! Then I had to undergo MRIs. Those were THE MOST uncomfortable experiences I had ever endured. I recently had to undergo two MRIs. Sheesh! As I mentioned earlier, the follow-ups are still ongoing.
At this point, I'm feeling more active, and my mobility is improving. There were times when I felt my recovery was rushed and wished I had had more time to process the ordeal of having brain surgery. Wow! When I type the words “brain surgery,” they now have a different effect on me. I feel empowered when I say, “I survived my brain surgery!” Hallelujah!
When it comes to my side effects, I have to be honest. There are times when my brain is functioning well, and other times when I experience some memory loss. I just have to remember to follow my surgeon's instructions and take my medication every day. It's not easy because I'm already taking medication for bipolar disorder. When I write those words on paper, they resonate differently.
Speaking of bipolar disorder, I have to say that I have endured many storms. Some were due to my own lack of knowledge, while others resulted from a lack of support from certain family members. There were times when I lashed out at my loved ones after I was first diagnosed in 2001. The first three years were very difficult because I was combative and didn't want to accept the fact that I had this mental disorder. I kept getting in my own way and was unwilling to accept that this was my new normal.
I was in and out of psychiatric hospitals. One in particular was very unprofessional. I remember that one of the aides who worked at the hospital scared me! The individual's treatment of me gave me pause. Even though I had medication in my system, I still remember the devilish look in those eyes! The person was racist and referred to me using the “n-word.” While I was at this hospital, I lost a very valuable gold chain. I was very upset and tried to return to see if the staff had recovered it.
After I was discharged in 2004, I was stable enough to take care of my son, who was four years old at the time. I remained stable for the next seventeen years. Then COVID hit us. It hit us HARD! I remember not being able to leave the house for six weeks. Having to wear masks all the time and stand six feet apart was crazy because you never knew whether someone standing nearby had caught COVID.
At that point, I was approaching a manic episode. I felt that all the demons I had yet to deal with came rushing at me, and I just couldn't handle it. I got into an argument with my husband, and he had me admitted to the psychiatric ward. He said that he was afraid for our daughter at the time.
Because of my manic episode, I was admitted to the local hospital first. Then, I was transported to a psychiatric facility in the middle of the night. This facility was definitely “one for the books,” meaning it had a lot of “unsavory characters” among its patients. I understand that patients have their crosses to bear; however, I believe the facility purposely focused on the “unsavory.” There were nights when I was scared to be there. I felt like I was in prison.
One night, a transporter was bringing in a patient and asked if I wanted to go with them. I don't know why I said “yes,” but I did. The next thing I knew, I was being transported to another facility. I was crying and scared! Then I was placed in what I can only describe as a jail cell because it had long bars. I was later brought back to the original facility, where I continued my treatment. I was discharged in April 2021.
About six months later, I received a call from the neurosurgeon. He asked if I had undergone surgery for my moyamoya syndrome. I said, “No.” He said that he would take my case and perform the surgery. My surgery was scheduled for December 17, 2021. I remember feeling very nervous and anxious. My surgery took about 12 hours. By the time I woke up, it was already 7 p.m. My head felt cold, and I realized that my hair had been shaved off. I was transferred to the Neuro ICU for the first two days. Then I moved to a regular room, where I was supposed to continue my recovery. I was supposed to stay in the hospital for a week, but because of a spike in COVID cases at the hospital, I had to leave after four days.
Then I went to my mother's house to complete my recovery. My mom and dad were instrumental in my recovery. I felt as though I was on a timetable because my daughter was on winter break from elementary school at the time. To this day, I sometimes feel that I didn't give myself enough time to recover properly from the surgery. Nevertheless, I was able to go home in time to resume my motherly duties.
Since the surgery, I have had to attend several follow-up appointments. I've undergone angiograms, which are very uncomfortable. I've also had MRIs, which are even worse than the angiograms. But my neurosurgeon has been a godsend throughout this whole process. I am forever grateful that he performed my surgery.
Nevertheless, this journey is definitely one for the books. Yet, I am rising like a phoenix from the ashes. I'm still writing my story and living out my dreams. There are days when I don't have the energy to do anything, yet somehow, I get up and complete my tasks. I keep my “why” in mind: my husband, children, and granddaughter.
In conclusion, this is me, Daarina, in a nutshell. I'm a wife, mother, and grandmother who has survived moyamoya syndrome while living with bipolar disorder. Thank you for reading my story. May it empower you as I continue to soar to greater heights.
