A Medical Farce/Miracle/Impossibility

For a long time “disabled” was a dirty word for me. I spent the first two decades of my life overcompensated by being “amazing” and hiding any medical problems I struggled with. I even preferred to be seen as flaky than admit, “No, I just had another emergency brain surgery.” Now I am wiser.

When I moved to Los Angeles for graduate school I had to find all new specialists. My new neurosurgeon did not know what to do with me. “It is statistically impossible for someone to have everything you do.” He sent me to a geneticist. But after chasing a whole lot of things, they couldn’t figure out what was the cause for my extensive medical resume. Here it is:

Subarachnoid Hemorrhage (brain bleed): This happened when I was an infant and was corrected with surgery. Technically it should have killed me, and I was hospitalized for several weeks. The bleed was confirmed to be caused because someone violently shook me, and you know what they say about not shaking babies. This is why.

Hydrocephalus: There are fewer than 200,000 cases of Hydrocephalus every year. This was a complication of my brain bleed was diagnosed when I was just under eighteen months after I found not breathing and unresponsive by a sitter. Technically I died, but whatever. Pretty sure it was my third time (at least). A VP shunt was put in to “correct” the issue. Since I have had a couple dozen shunt revisions (brain surgery). I have Slit Ventricle Syndrome which only affects “a small minority of shunted patients”. Very little literature exists on it. I am also shunt dependent. When it breaks I have a very small time period to get it fixed or no more me. For the record, this is usually what kills me. (No worries though, I always come back.)

Osteo Genesis Imperfecta (OI, brittle bone disease): I am the super breakable man/woman/person/whatever! I often joke I’m not sure there is a bone in my body I have not broken, but I actually don’t think I’ve broken a rib before. Or a hip! Skull, breast bone, collarbone, arms, legs, feet, hands, toes, fingers, vertebrae (multiple), tailbone are all favorites though. Positive things this disease has afforded me: One hell of a pain tolerance, like it doesn’t really register AND I didn’t have to do gym in high school! (My orthopedic surgeon forbid it!) None of that awkwardness – yay! Also, I am hella fast on crutches – we’re talking road runner fast. Right now I have two bones broken in my left hand, but I’ve written three new pieces and earned two new publications despite “pecking” at the keyboard. Because that’s how I roll.

Aortic Valve Insufficiency: I have had three aortic valve transplants. The first and second were in the eighth grade (the first an automatic failure, extra time in the OR for me). The third when I was twenty. I’m hoping to go several more years before I need a fourth. Because while I was discharged after just two days after my first two surgeries (I know how to be the model patient, thank you) after my third I cannot deny that recovery is no joke. And I hate when things slow me down. Seriously, I cannot be still.

Other Heart Stuff: Amidst chasing lots of things a two teams of cardiologists have argued (much to my amusement) about whether I have a heart arrhythmia. I also tend to have aortic stenosis when I need another valve transplant. Which, just let me tell you, having both leakage and stenosis at the same time is a real trip!

Infective Bacterial Endocarditis: On my 25th birthday, nearly down to the minute I was born – I died. (I know I made a habit of doing it up until that time, but this is the one that really seems to have “mattered”.) After eight days and hundreds of tests (I am happy to report I do not have West Nile Virus or Lupus, among many others) they discovered I had Infective Bacterial Endocarditis. Why was it special? Well infectious disease specialists estimated I had it for at least eight months. Typically people have it for only two to four weeks before they show symptoms and are treated. But my immune system was kind of amazing back then. This also meant it was resistant to all the normal drug therapies etc. I basically lived at a hospital/treatment center for four months until I finally “overcame” it. My two takeaways: 1) If you have a fever of 108 don’t be stupid and try to cure it with Gatorade. GO TO THE HOSPITAL, and 2) Spinal taps are a lot less fun than you think they are, but the scar they leave behind isn’t the worst you’ll get in your life.

Strokes: I had two severe strokes when I died on July 28, 2009 (technically twelve hours before). The rehab was pretty intense. Afterward I had to relearn nearly everything. I typically forgot something – a thought, what someone told me, something that happened – in under forty seconds. I’m also profoundly deaf (see below) so imagine how communicating with my medical team went. I lived by post-its and notebooks. If I remembered to look at them. But word finding was perhaps the worst. Every now and then I still realize I say the wrong word or have to search for what I already know. But I don’t get as frustrated at myself anymore.

Seizures (Epilepsy?): Epilepsy runs in my family and as a child I was diagnosed with it, but I only had petite mal seizures. Since that time six neurologists who specialize in seizure disorders have argued about whether I have epilepsy or not. The final word is that I have seizure activity that some have called “spiking” which is not epilepsy, but isn’t “not epilepsy” either. Confused? You’re not the only one! When I died I had a bunch of grand mal seizures though, but again this was because of a 109 degree fever (I finally achieved a life ambition of being a literal hot head), not a chronic condition.

Goodpasture’s Syndrome: An autoimmune disease that proves I am actually pretty special. Only one in every one to two million people are diagnosed per year. Basically my autoimmune disease was Superman on steroids and decided to attack my kidneys and lungs, causing the organ lining to bleed and ultimately these organs fail. My kidneys did fail and I was pretty terminal for awhile. My lungs are also filled with fluid from the incident, but nothing major. I was on dialysis and chemo and a bunch of other treatments. My doctors told me I wouldn’t make it. I filled out all that stuff because I shouldn’t make it. And then just as things were at their worst, I was better without explanation. I went from less than three percent kidney function to over sixty percent overnight. Let me tell you, when you are on the receiving end of such a “miracle” (what the doctors called it) you become really popular and everyone wants to meet you and study you. It’s like you’re famous or something, only for medical folk. I no longer need dialysis and remain at roughly sixty percent kidney function. My first published piece was an essay about this experience – Return To Sender.

Gastroparesis: My stomach doesn’t empty. Or more accurately it empties very slowly. Most stomachs digest a meal in four to six hours. I digest 1 ounce of food in 22-26 hours. Stomach pain and vomiting are a way of life. But don’t worry I always carry a few cases of breath mints on my person and am a pro and “controlling it” to the best of my ability. Can you believe no court wants me to do jury duty? It’s like courtroom hacking and random vomiting as an almost guarantee is not high on their list of desirable juror traits. To each their own.

Polycythemia vera: A bone marrow disorder that was probably a complication of my year of chemo. Fabulous. It’s all right, lots of headaches and body aches if I don’t get regular phlebotomies/infusions every six weeks. I no longer pass out when they drain my body of one sixth of my total blood though. Progress!

Blood Stuff: I have so many blood mutations they found (when diagnosing me with Endocarditis) it’s ridiculous. But I just take a few pills and that’s that. I actually kind of wish all medical problems could be so chill.

Profound Deafness: I’m deaf, mostly. I am deaf to a majority of pitches, and with other pitches/sounds I have severe to profound hearing loss. I read lips. This happened later in life so I speak in a way that people have no idea. And my long hair usually hides my hearing aids (not intentionally, but I wear my hair down mostly). I am very vocal about my deafness, hearing loss and equal treatment.

Complex Post Traumatic Stress Disorder (C-PTSD): Most people know what PTSD is, but many do not know what C-PTSD is. Think PTSD on steroids. While this subcategory of PTSD is not recognized in the DSM, it is recognized by therapists and other mental health professionals. C-PTSD can develop after repeated and prolonged trauma from which there is no escape. People most likely to be affected include child abuse survivors, Prisoners-of-war, people held in captivity for long periods of time, and torture survivors. It is an important distinction because PTSD does not include a cluster of symptoms present after repeated trauma. As someone who survived prolonged abuse for more than a decade, I can tell you that the difference between PTSD and C-PTSD is important. Today, I feel I manage my C-PTSD as best I can. Flashbacks, night terrors and the like happen every now and then but are no longer a constant. For anyone struggling with this, I highly recommend therapy. Take it from a therapy-vet and someone who doesn’t particularly like to “talk it through” – it helps. Just find someone who specializes in trauma.

And that does it – I think. Obviously, my life is very medical heavy and therefore so is my writing. And so is my activism. Being disabled affects me so much more than being gay or gender nonconforming does. The world isn’t built for “us” and yet unlike other groups the “us” all have so many different needs and requirements. Patient rights, equal treatment and changing how culture at large sees people with disabilities are causes that are very important to me.

Even with everything, I don’t consider myself limited. I’ve died several times and here I sit, obviously I am one stubborn SOB. If someone tells me I can’t do something I want to because of one of my medical conditions not only do I find a way to do it. I gloat about it. “Look what I’m doing? What do you have to say now?” Tell me I can’t do something is like guaranteeing I will find a way, and let you know all about it.