Theresa G.

Sitting with the pain IS the healing; I have needed to trust that allowing old wounds to heal (both physical, mental and spiritual) will reveal a new freedom, strength and resiliency to me.

Diagnosis: Undiagnosed

My name is Theresa and I have been diagnosed with a vestibular disorder, convergence insufficiency as well as post-concussion syndrome. It all started with a bicycling accident that resulted in trauma to my head, neck and left shoulder. My past medical history was unremarkable with the exception of a neurological condition resulting from a fall in 2004, which also involved a blow to the head. It took from December 2013 until February 2016 to be properly diagnosed, after multiple consultations with varying medical providers from multiple specialties.

Before this began, I enjoyed a very full life, had varying interests and activities; I loved being outdoors and on the go. I am an accomplished professional in the HIV community, a published author, lecturer and consultant in HIV nutrition. I have extensive experience in multidisciplinary grant program management and development. In addition, I am an ardent advocate and activist.

A nature enthusiast and animal lover, I cofounded a volunteer group in Brooklyn’s Prospect Park called “WILD for Prospect Park.” I also obtained my certification for wildlife rehab. Athletic by nature, I was a runner, bicyclist and a gym rat up until the day I fell sick with vertigo. I love the arts, dabble in photography and play guitar – classical, rock, folk and Gypsy jazz. I love to drive, and used to think nothing of getting on the road for the day to explore new and exciting locations that would provide fodder for my photographic endeavors. Life was good. Life was full. Until suddenly it all came to a screeching halt. My life went from normal to Kafkaesque in one spin of the room.

It was December 16, 2013. The morning had started with a headache, some dizziness and associated nausea, which I had been experiencing for 24 hours. I thought I was coming down with some sort of a bug. This had been preceded by three months of an annoying pulsating tinnitus. The morning had also started with a volatile fight with my ex about my work schedule and habits, as if I worked for her. It was completely out of context, however it occurred in the walk-in closet of the master bedroom. I remember feeling trapped and it enhanced my feelings of dizziness and nausea. Later in the day, she would text and apologize for “pulling out the monster card”, to which, I replied,” I could’ve really done without that interaction this morning before heading out to work”.  (This “scene” would come up during an intense Tapping Session in which the practitioner uncovered a mind-body connection related to my soon to come diagnosis).

I was sitting at my desk multi-tasking, which was my usual MO at work, when all of a sudden the computer screen appeared to jump out at me.  I pulled back in my chair, turned away from the screen and thought to myself, “That was odd.” In that moment something happened that had never happened before: the room started spinning to the left, the ceiling was spinning, the floor was spinning — in fact, everything was spinning, including me! It was as if the world had become a ceiling fan or a merry-go-round: you know how it goes from a low to medium speed and then to a fast speed? Well that’s exactly how it felt. Again, it seemed to pass and I remember thinking to myself, “boy that was trippy.” Within minutes, it came on again, this time even faster and more furious. When I got through this second round I realized I needed to call my boss. While I was on the phone with her, it started again and I screamed, “Help, help, help!” There were only three people in the building on that particular day; two people heard me and came running into the room I was working in. The spinning continued and 911 was called. In the 17 minutes that it took for the ambulance to get to me, I had had about seven severe episodes. When EMT arrived, I begged them to “make it stop”. One of the EMTs said to me, “It feels like you’re dying doesn’t it”? I blurted out, “yes.” In fact, I thought I was either having a heart attack or stroke. All I know is that it was by far the scariest experience I have ever had.

I was taken by ambulance to a local hospital and diagnosed with severe episodic vertigo. After many hours of observation, hydration and medication to calm the nausea and vertigo, I was discharged. While in the hospital there was discussion of having a brain CAT scan, but the doctors dissuaded me from doing so. They said it was likely the kind of vertigo that would self-resolve. This turned out to be the first in several medical mistakes that occurred while unraveling the mystery of what would become a complex of three distinct diagnoses. When I was discharged from the ER, it was suggested that I follow up with an ENT specialist. That would be the first stop of many stops to come.

The ENT could find nothing wrong with my ears. He sent me for neck imaging (bilateral carotid ultrasound) to rule out a possible clot. The imaging was done that same day and was benign/normal. The ENT specialist said that vertigo was pretty common, that it could originate from the ear, neck or brain and that I would likely have another episode within a week or two. (Which I did have about a week later while home alone. I quelled another 911 call by having a friend, a nurse, come over and “ride it out” with me.) He added that in most cases it would likely go away on its own in two weeks to two months, but he also told me to see a neurologist. I did so promptly.

After extensive neurological testing, the diagnosis of vertigo was confirmed. Although my neuro- exam was essentially normal, except for an unsteady gait, I was still feeling dizzy and just generally off/ not myself. This feeling was one that I would find to never go away in the ensuing months.

Despite her findings, the neurologist ordered a brain MRI. The results suggested possible migraine, prior inflammation, or cerebrovascular risk. Although this meant nothing to the neurologist at the time, it would actually come to correlate with something *later when a second neurological opinion was obtained (more than a year later.) This neurologist referred me to a highly specialized ENT, called a Neuro- Otologist, for additional and extensive testing. He was the best that NYU and New York City could provide.

At this point my working diagnosis was vertigo, Labyrinthine dysfunction and vestibular neuronitis. The cause was still unknown. He repeated audiology tests re-confirming that my hearing was impeccably normal. Additionally, he felt inclined to order a brain MRA, the findings of which suggested that I had **stenosis of an artery leading up to the right side of my brain. Unable to address this finding clinically, he referred me to yet another highly specialized doctor- a Cerebrovascular  Neurologist. At this consultation, I was told that the finding on the MRA was either an “artifact” or a real finding; that barring brain surgery, this doctor could not tell me which it was. He suggested I prophylactically take a baby aspirin each day. I went back to the regular neurologist who finally referred me out for vestibular rehab. I was put on a wait list and wasn’t called for about two months.

During that time not much happened other than my feeling really horrible. I had problems moving about, problems eating and I was severely exhausted all the time. On the few occasions that I would go out of the house I would find that upon hitting the street, my symptoms got worse immediately. I felt as if I was walking into a beehive, as an unwelcome visitor, and everything was swarming both at, and around, me! I came to understand that it was simply too much “neuro”stimulation; my eyes, my vestibular system and my brain just couldn’t take it all in and process it correctly.

Three months into this ordeal I finally started vestibular therapy. Although I immediately loved my therapist, I detested the testing and consequent therapy. I went once a week for about six months and each time I went I felt ill — sometimes during, sometimes immediately after – and then I would have what I would come to understand were “residuals” lasting 1-2 days after my therapy. It seemed counterintuitive to me that the therapy for this condition would make me feel worse before I could feel better!  Nevertheless, I did it every week, as well as home exercises three times a day. My therapists repeatedly pushed me, explaining that the exercises would deliberately invoke the symptoms in order to desensitize the brain. This was the only way forward towards recovery.

By Valentine’s Day of 2014, three months after first becoming ill, I knew already that my ex was struggling with the situation. For all intents and purposes I was essentially homebound. When I needed help most, she withdrew. Oddly enough, she was under the false impression she was being a wonderful caretaker. As demonstrated that Valentine’s Day, we had a fight over this issue. Instead of using this opportunity to explore what was and wasn’t working in terms of my needing to be taken care of, she became volatile, chasing after me and throwing my Valentine’s Day present at me. I swayed and swerved to get away from her, crying the entire time. This fight would exemplify our dynamic moving forward in a manner that would feel like moving through a labyrinth.

In the ensuing months of vestibular rehab, I would often arrive emotionally and physically exhausted from lack of sleep and the ongoing stress of this dynamic at home. My vestibular therapist offered to speak with my ex to explain that sleeplessness, stress and fighting would only hamper my ability to heal. She was provided with his contact information but made no effort to call him for over a month. When they finally spoke, he told me that she almost demonstrated a willful ignorance to my plight. In the interim, I was also receiving free sessions with a social worker there who had extensive comprehension of the impact my condition was having on me, as well as how the dynamic in our relationship was changing. My ex never called the social worker, however I was encouraged to see her at no cost for a period of about two months. It was there that I came to understand that my sense of self- for myself and within the relationship- needed to be addressed. At this juncture, I insisted that we enter couple’s therapy.

We decided on a local couple’s therapist because I was still having problems traveling. But even that took two months to set up. I agreed to this only because it was convenient, and only because the therapist theoretically agreed to review information on vestibular disorders before we met as a couple. It became apparent to me two sessions in that neither my ex-nor the therapist understood what I was going through. So the two of them bonded in solidarity over their perception of my reality, undermining my reality, big time. This is not conjecture, but rather based on a review of my medical records gathered from sessions we had together as a couple.

When applying for disability, I was in charge of collecting my medical records from all providers that had seen me to date. Every single medical provider that saw me, whether for an hour or twenty hours, agreed to provide me with my medical record. But this couple’s therapist flat out refused to release my records. And when finally forced by the Office of the Professions to do so, they had been redacted. In fact, the records received clearly confirmed a lack of comprehension of the situation and was also devoid of clinical objectivity. Rendered useless, I then had my attorney submit what we had to date on behalf of my claim. It took an entire year for my disability to come through and I had zero source of income that entire period. When the checks were finally mailed, they inadvertently went to my ex’s address and not once but twice was returned to sender, further delaying my financial assistance.

From a psychosocial perspective, I made note of a few things on the home front.  Typically, while conducting vestibular exercises in the home my ex would pass by me doing the exercises and from time to time I would say to her, “If you really loved me you would try doing them with me.” This was consistently met with her not even acknowledging me, ergo discounting both my requests and, well me.

One night at dinner I said, “I think I’m having a problem with word acquisition.” To which she replied, “You can’t make a statement like that and use the word acquisition and say you’re having a problem with it.” Discounted yet again, I felt myself demoralized. Later, this statement and observation of mine would serve to be one piece of a three-pronged puzzle. Nearly 2 years later, I found out it was not word acquisition, but rather word retrieval that I was indeed having a problem with. This, like so many other times, I felt not only misunderstood, but also confused about my own reality.

As members of the VeDA group, we know what our illness is, and since it is for the most part, an invisible one, others not afflicted cannot comprehend, making it easy to discount our journey.

Having a Master’s degree from New York University in Clinical Nutrition and having been in the field for 30 years when I fell ill, I should’ve known better but I watched as my weight plummeted to well below normal. I went from a pre-vertigo weight of 104 to 96 almost immediately.

The nausea associated with my vertigo was unrelenting. I had been on medication for it but since it was making me even dizzier, I stopped it early on. I learned that ginger was my friend; pretzels and ginger ale were my go to foods, with frozen yogurt being a special treat on a good day.

During this time of vestibular rehab, a job I had held for 20 years in an industry I had much success in for thirty years came to a close. With my FMLA leave over, and not cleared to return to work, I was notified that my position would no longer be held. That same day I found out I no longer had my job, I was profiled nationally for being a “HIV/AIDS Hero”. I got a text from a clinician who used to work for me saying, “Congratulations, Boss, I see your glossy photo is in the national zine!” Boy, Talk about bookends to a day! It was a day filled with both of devastation and jubilation.

Concurrently, my mother suddenly became sick and within two months she had passed away. I was traumatized and devastated. This loss was profound and made life feel almost unbearable, on top of everything else I was dealing with. In a mere six short months I lost my health, I lost my job, and then my mom. At this time, I would have the first in many existential crises’ to come. I remember saying to a friend of mine, “What more can I lose?” My friend replied, “Never ask that question Theresa, there is always something else to lose.” How true those words would come to be in my life especially in the upcoming months.

Within three months of my mother’s death, my ex was really distancing herself, and her moodiness around her burdened existence with me became undeniably and painfully front and center in our dwindling relationship. Nine months into my illness she did a 360° over the course of six weeks. We went from discussing marriage, and ensuring housing security for me to an abrupt, bizarre and brutal end of the relationship.

It had been around this time that I had just confided in her the depths of my despair about my circumstances, which included all of the losses that I have already mentioned. I was starting to feel self-conscious about my sense of being and it seemed to me that she was becoming perhaps embarrassed by my infirmity. I remember her saying things like “I don’t want to have to work so hard”; “I am having a nervous breakdown.” I realize now in retrospect that probably was her reality. Being a caretaker to someone, who is essentially homebound and limited, is incongruent with how she wanted to be living her life. Being recently freed of the ties that would normally tether her to home, 2 college-age students and the death of her own mother, me in my illness became an inconvenient truth. I remember her saying to me “this is my time” highlighting in my mind that I had become a burden to her.

The bottom line is, we just didn’t see things the same way. My upbringing along with three-plus decade career in HIV/AIDS deeply ingrained in me the willingness and ability to assume a caretaker role. In fact, it was a position I considered a privilege. Those doing HIV work, especially in the early days like myself, knew that attached to that privilege was a burn-out factor, yet, I chose to do the work with passion anyway for three decades. As for my ex, one could surmise she was simply not hard wired that way. No judgment here, just an acknowledgment of our core differences.

The actual break-up was traumatic and executed in such a manner that my brother likened it to a big corporate business transaction or sudden and duplicitous layoff from a major bank. There was no discussion, just a unilateral decision on her behalf. I was told via a cell phone call from her that we needed to figure out how I was going to “transition out” of the apartment and given two weeks to do so.

When pressed for an explanation, I was told that she realized that our core differences were the reason she decided the relationship couldn’t work. Ironically, I had identified these differences on our third date, when she reassured me that these differences would complement one another. It seemed that my illness had become the tipping point for this radical change in perspective about the viability of our relationship. I thought she had my back, but clearly she didn’t. So, in addition to all the losses previously mentioned, I was losing this person, the relationship and my home. Any one of these major life events would have pushed someone to the tipping point: combined together, my “trifecta” became squared.

Trying to find housing with no source of income, despite some savings in the bank, would put me in an extraordinarily precarious situation. Since I wasn’t out in the designated two week period, my ex moved to take legal action to remove me from the home, subsequently referring to me as “her tenant”.” So I went from intimate partnership to tenant in one fell swoop. It was challenging enough to move into her place with orthopedic issues the year before, so I need not tell you what moving out was like for me with my vestibular challenges. The stress of the situation while waiting to find a place to live was extraordinary. I was utterly exhausted. I started losing weight again, this time dropping to 86 pounds by the time move out day descended upon me. By the time I got into my new apartment I had a complete relapse, bringing me back to square one. Unable to afford COBRA insurance anymore, and rent at four times the amount I had ever paid, I moved onto Medicaid through Obama Care. I had applied, but not yet been approved, for disability at that point.  In fact, my disability attorney told me that winning a case based on vestibular disorder would be extraordinarily challenging. My appeal went on for almost a year.

Two weeks after my move, I had my annual dermatology consultation when five precancerous lesions were removed. Upon disrobing, the dermatologist commented on my skeletal appearance, 84 pounds that day, and the general condition of my skin. He suspected I had a fatty-acid deficiency that correlated well with my poor nutritional status as evidenced by my weight.

It took my family three weeks to unpack me as I was unable to do so myself. I was completely depleted. I couldn’t move. I couldn’t eat. I hadn’t seen the likes of 84 pounds since I was in grammar school. My old go-to foods of pretzels and ginger ale weren’t even cutting it.

My friends were concerned about my physical condition, and employed social context around eating, encouraging me to re-engage with food and nutrition. This enormously helped in rebuilding my strength and connection to food, but it would take me over a year to actually start putting weight back on.

In March 2015 I was hovering about 89 pounds when I sustained a spontaneous acute fracture of my rib that was originally thought to be a possible heart attack. When I returned to my primary care physician she surmised, as I should have known, that my ongoing malnutrition was the cause of my fractured rib. A DEXA bone scan revealed osteopenia for the first time in my life. As a result of the combination of poor nutrition, homebound status and immobilization, my bone integrity had become severely compromised. It took this constellation of effects for me to truly realize that I needed to push the nutrition card.

In a six-month follow-up with my neurologist I was told, “There is nothing else I can do for you; this has gone on too long.” This seemed like a patented answer to me. I called in a favor to a colleague who got me into NYU Rusk, Rehabilitative Center where I got a second opinion with a fabulous neurologist there. This new neurologist was paying attention to everything I was saying to her but more importantly started asking probing questions. One of the first things she said to me was, “Have you ever been asked if you have migraines?” I said no, but I had noticed that since the start of the vertigo I had been having daily headaches. The next question she asked was if I ever hit my head. I reported two instances, one in 2004 and the second occurring with the bicycling accident in 2013 that preceded the vertigo. She reviewed my brain MRI, made a presumptive additional diagnosis of * vertiginous migraine and prescribed high doses of vitamin B2 and magnesium. Things were starting to make sense, pointing her clinical assessment and treatment of me in a completely different direction.

She then referred me for an evaluation at the NYU Rusk Department of Neuropsychology. Three days of testing revealed findings remarkably consistent with post-concussion syndrome. The neuropsychologist also concluded that my vestibular disorder was likely related to that, and additionally, the tests suggested there were problems with my visual tracking and acuity. This resulted in a referral to SUNY College of Optometry for further assessment of my eyes as well as problems I was having with reading and focus. At this time and through no fault of my own, but rather that of a bureaucratic glitch, I had no health insurance for the ensuing 3 months. Hence everything concerning medical workups and services came to a screeching halt! I was in suspended animation once again.

It wasn’t until February 2016 that my medical insurance and therefore medical journey and services resumed. I was first seen by an Occupational Therapist who specialized in vision therapy at NYU Rusk. She did testing that, again, revealed results consistent with a concussion and confirmed my visual problems. She provided me with a blue shield to put as covering over my computer screen monitor to decrease some of the symptoms that would be invoked by spending too much time at the computer. She was also relieved that my next stop was SUNY Downstate’s College of Optometry.

At SUNY, I spent two days in comprehensive testing in the head trauma unit. There, I was seen by a team of doctors led by the chief of the head trauma unit. I became increasingly symptomatic during the testing, much like my vestibular testing. They quickly put a name to all the symptoms that I had been experiencing and diagnosed me with severe Convergence Insufficiency. Essentially, SUNY’s doctors concurred with the clinicians at NYU RUSK in terms of my trifecta: Post-concussion Syndrome, Convergence Insufficiency and Vestibular Disorder. Puzzle solved! But the complexity of my situation was mind blowing, even to the clinician in me.

I was prescribed new glasses with a 15% blue tint to help with my photophobia and bring my vestibular symptoms down a notch; much-needed reading glasses, and lubrication drops for dry eye. They also confirmed that I had the beginnings of a cataract that was adding to my lack of depth perception, thereby shedding light on my ongoing problems with night vision. I was encouraged to embrace the new 15% blue tent glasses as a fashion statement, even though I felt like it was a throwback to the 1980s when everybody was walking around with tinted glasses. They instructed me to: ensure that the base curve of my glasses were all the same; to avoid lenses made out of polycarbonate; and highlighted the absolute need for an antiglare coating to avoid invoking any visual disturbances.

The doctors at SUNY sent me home with eye exercises, and at the 3-month mark I was advanced to their computerized program called HVT (Home Vision Therapy) while they monitored my progress by remote. Once again, I found myself wanting to just push through, thinking that “the quicker I get through this the better”, but was and am constantly reminded by my providers that unlike rehabbing in my orthopedic issues, you cannot push through these things. This would be my lesson – learning to find ways to challenge myself yet moderate at the same time.

The third thing that commenced that week in February 2016 was the actual beginning of Neurocognitive Therapy with a neuropsychologist. Mine was a complex case and the complexity had persevered through so many significant life events, so many points of missed diagnoses and so many lapses in coverage and therapies/services. It was only now that I received a comprehensive explanation of what had been afflicting me all this time: that all three things were connected; my brain had been injured, my eyes were misinforming my brain of information being processed and my vestibular system just went haywire. Furthermore, they explained the cumulative effects of concussion and that latent responses are often seen. Indeed, a perfect storm! Ah, but the works that lie ahead of me was daunting:  rehabbing three distinct and differing aspects of my problem.  This translated in to extraordinarily challenging work physically, emotionally and spiritually. Soon enough I would experience that this work was not for the faint of heart; rather, it is a full-time job.

I began one on one work with a neuropsychologist. After about four months in, he decided to move me into a group setting so that I could enhance the cognitive treatment modality. I would do this in conjunction with seeing him individually. The group setting would allow me to be with other people who were having similar challenges. It would be here that I would find community, amongst peers – all smart, gifted people on a journey – where we all spoke the same language. I didn’t know then what I know today: that the vestibular disorder, history of concussion as well as convergence insufficiency all have aspects that can lead to neuro-cognitive issues.

In terms of alternative therapies, I have had some pretty good success with EFT, or Tapping, Bach Flower remedies, sporadic and gentle chiropractic care, acupuncture, the use of vitamins and minerals – with moderate activity, calcium and vitamin D supplementation to promote bone health. I also “live by the breath” and utilize 4X4 breathing techniques to ameliorate symptoms, with much success. For the first time in my life, I engaged in Kundalini Yoga which I found to have an emphasis on breathing, but modifying so as to avoid doing any pose resembling e.g., “down dog poses”, which could trigger my  symptoms. And I never ever leave the house without the following rescue remedies in my pocket: ginger and peppermint candies, and lavender and mint essential oils.

At present day, I basically live at NYU Rusk. This encompasses four distinct appointments per week: vision therapy, vestibular therapy, one-on-one and then group neuropsychology. NYU Rusk’s model of mind- body connection as well as interdisciplinary team approach has been extraordinarily effective. I cannot say enough of them. I am so lucky to have fallen into the capable hands these specialists. Alas, it is the only place I feel hundred percent understood. They totally get my reality and never ever discounted. Most importantly, we all speak the same language! Simply being understood is tantamount to the healing process. I also feel blessed by the many gifts and talents of my alternative therapy practitioners all of whom I am greatly indebted to. Namaste.

In a recent session with my neuropsychologist we talked about how overwhelmed it felt doing all four therapies at once. He explained to me that although they have the services that can move a patient like myself forward, not all are able to travel this path. It takes an extremely tenacious and determined spirit to get through it. I still struggle with not being able to strive for perfection at 110%. I am committed to continuing on this journey until I am done. I still hold aspirations for the future even though I’m not sure yet what that will look like. I will concur that the “slowing down” of life that occurred naturally as a part of my illness has opened up my creativity to a more expressive and expansive level. During this illness, my photography really started to take off! And since I now know there is a nutrition component to neurological conditions such as what I have, I thought, “who knows, maybe this will be my new career path”.

Where I am at now? I’m at a juncture. To me it’s like having one door closed behind you and another open before you, except at present I appear to be hovering in a corridor. But I remain open to the possibilities.

Because of my continued need to pace myself and the unpredictability of my symptoms, it is impossible for me to make any firm commitments. I volunteer my time to places that still appreciate what I have to give.  That has included my involvement with VeDA. I did a nutrition piece on Management of Nausea, Vomiting and Anorexia for their website. I also told Cynthia that I was working on a photography series entitled, “Patient Behind the Lens” which was born of my desire to capture via an image what a symptom or illness looks like. This series was driven by my own frustration of having inadequate language in which to explain to people, both family and friends, how I am feeling at any given moment in time. When people hear I have vertigo they say, “oh, I get dizzy, too,” not understanding that they are completely different experiences and sensations. When I try to explain I am “maxed out with neuro-fatigue”, or need to sit in a dark room with sunglasses because of photophobia, people will say, “I get tired, too” or “we all need quiet time”. Navigating extremes of weather particularly in the summer, e.g., changes in barometric pressure which I feel which such intensity, people will say “oh, I feel the heat too”. These kinds of remarks although attempts at showing understanding only end up leaving people like myself feeling misunderstood and discounted. I have found the photo series to be quite an effective educational tool. Although eye-hand coordination still triggers me, I am trying really hard to employ modification techniques around photography and playing stringed instruments. I now find that if I limit TV to 1 to 2 hours a day, use a rule of 20 minutes on and off regarding computer and smart phones, and avoid excessive activity like texting (which really is triggering) helps with symptom management. I have come to rely on podcasts and occasional audiobooks to nourish my intellect. One of my peers from the group at NYU Rusk saw that I was struggling with self-moderating and suggested that I utilize this metaphor for times when I need to slow down: “think of your brain is an air conditioner that conveniently has an energy saver option; be sure to ensure it is always set to this option and always use a timer”. I really appreciated his suggestion and that he was coming from a place of knowing first hand the difficulty in acknowledging and accepting that you simply cannot plow through recovery of this nature.

So, what does my day look like? Frequent visits to NYU Rusk; home exercises incorporating the three areas I’m currently rehabbing; chanting; resting; volunteering; helping others who are also traveling this path by sharing my experience – both strengths and weaknesses. Basically I am trying to reinvent myself. I have been a Buddhist for the last 16 years and chant 2 to 3 hours a day now that I’m living alone. It has been a strong and steady presence in my life particularly these past two years. I recently published a faith experience about my mom’s death encapsulated within the doctrines of the Buddhism that practice.

I have been volunteering as the lead clinical advisor to an HIV paper that will probably come to publication at years end. As if manna from heaven NYU RUSK provided me with the computer software application DRAGON SPEAK EASY so I could continue to pursue my writing and consulting on nutrition and grants via dictation. Most recently, I’ve branched out my skills in to the worlds of photography and documentaries.

I close on this note: having a chronic and poorly understood illness is isolating; and the more it goes on the more people tend to fall off. My providers and my peers have become new family to me. When I was a clinician taking care of HIV/AIDS patients, I used to see it all the time – some patients would say that they considered their medical providers to be the closest thing to family that they had because friends and families essentially abandoned them. Although I fully embrace my team of providers with fierce love and gratitude, I have come to understand that reality all too well. I cannot speak enough about the need to raise awareness for all chronic illnesses, which speaks to my decades of work as an HIV activist, and advocate. The sounds of isolation can be deafening at times. I count myself lucky to have a rather large family and a small pocket of friends that I know have got my back no matter what. I guess it all comes down to not begrudging your life and making lemonade out of lemons. (Easier said than done – I have to remind myself this every single day. I have a post-it next to my bed that says, “Wake up with purpose in your day will go well”.)

Lessons learned: I tend to think of life now as BC (before Concussion) and AC (after Concussion). And viva la difference! Sitting with the pain IS the healing; I trust that allowing old wounds to heal will reveal a new freedom, strength and resiliency to me. More succinctly, I understand now that the journey I have been on for the past 2+ years will simply become a part of my life’s rich tapestry. Most importantly, I have survived to tell the tale.

As for my ex, I realize now that she never had my back then and she would’ve never been able to accompany me on this journey. It takes a very special soul mate and partner in life to actually want to traverse the more difficult path with acceptance, tolerance, understanding and compassion.

*/**Notation: the artifact found on the brain MRA would become a concern again during a stay in the emergency room in April 2016 where a TIA was thankfully ruled out. Instead I was thought to have had a flare-up of my thoracic outlet syndrome along with some vertiginous migraine activity. To this day, it continues to be monitored.

You can follow Theresa’s photography series on Facebook at Patient Behind the Lens, Lost in Words