While I Was Away

I have been silent and cloaked from sight for the last few years. Perhaps this next phase of writing may be a solo therapeutic activity; perhaps it will explain to those who knew me what has happened and why I went silent. I have spent much of my life trying to strategically say, write and do things that no one or job would then turn it around, criticize or use it against me concerning my health. That really no longer makes a difference. I guess I’m writing this one as some sort of synopsis.

In February 2011, on an early Sunday morning at home, I had a convulsing seizure and collapsed, hitting my head on the floor. From the last that I remembered, I was unconscious for about five hours alone in my apartment. I came to with a dry pool of blood on the floor and on half my face with a gash on my forehead. I hate going to the ER and thought I was fine despite the bad headache. I had things to do and I made plans with my friends for that night. Hours later at the market I apparently had a second seizure, collapsed and a quarter of the store heard my head hit the concrete. That fall left me with a visible scar on the side of my head where I bled the second time.

It fractured my skull, had a subarachnoid hemorrhage (brain bleeding stroke), subdural hematoma, entire frontal lobe contusions (brain tissue bruised), concussion and thus a traumatic brain injury. Half my brain had extensive bleeding from three locations. It was a fucking shit storm, cluster fuck and told it never happens from some one just falling. Well put me in another medical study then. I have no memory of any of it and the eight days in the hospital but only learned from my charts. They were very surprised I managed it without surgery and things were incredibly bad until my body or brain decided to keep going. Within eight hours on the sixth day I did a 180 turn for the better.

Doctors say it was a miracle I survived. And they say another miracle I can even walk, talk, write and appear ‘normal.’ I dispute the miracle part but rather some cruel punishment — that is for another entry though. My personality changed or has changed to what ever degree. The several friends I met only months before and after never got to know the real me and even thought I was weird. Others from years back may or may not have noticed some thing changed, especially for the two years after. It took more than two years for my brain to ‘heal’ but after I’m still different as the damage was done to my left temporal lobe, left frontal and next to my hippocampus — I’m supposedly lucky my long term memory is intact.

Forward to July months later, I was diagnosed with cancer. One of the better ones, thyroid, but I figured I already had enough to swallow so it was difficult. They were looking for it and was a situation that surgery was required. I was still trying to absorb every thing from months earlier, get well from that and then had three months recuperating from the surgery. Only had half of it removed so now I have the new doctors nagging me, giving me stats that it will likely return and grilling me on why I did not take it all out. It is the last thing on my growing list of medical concerns and certainly not the cancer I am concerned about.

My epilepsy is a bad kind. I probably always had seizures but much smaller ones. No way to ever know though. The stroke and scar tissue made it much worse.  The times I would space out when people noticed, I probably had a seizure. They can be triggered by infection among other things. The week of the stroke and seizures, I had a double ear infection and pneumonia. They alone dramatically affect my abilities because they make the things that were damaged in my brain even worse again. The last bad batch of convulsing ones were three in 12 hours and was hospitalized with my right shoulder, arm and hand completely paralyzed for three days. It was an eery, scary feeling especially when I could not communicate well with the doctors. It took six months for me to regain all motion and strength not to mention the other problems they caused. They are under control only some of the time but out of other drug options so the only next option would be surgery.

The brain injury and its damage slows some of my mental abilities but one would not think it also slows you down physically, at least I wouldn’t have thought it. And it slows how much my brain can handle; it’s difficult to understand but if you ever found yourself just saying “my brain’s tired,” it is kinda like that. Before it all happened, I had an IQ of 140. A few months after, it fell to 88 — those special classes in school are reserved for that range. Obviously it rebounded but who knows how much. I do not what to know. Eventually, more symptoms have piled on (they always have even before the stroke) so I went to see an immunologist despite my PCP saying no need. It was a good thing I did.

Last year, I was diagnosed with the thing that has plagued me my entire life, caused constant exhaustion, affected relationships, job problems, college delays and so on. I have common variable immune deficiency (CVID) and hypogammaglobulinemia. The ‘common’ is slightly a misnomer as it just means it is the most common of all primary immune deficiencies. It is genetic, pretty rare, difficult to diagnose and starts at birth. No it is not like HIV or AIDS nor is it contagious for any one that might be reading this that I have kissed or slept with.

My body has always worked twice as hard just trying to keep from getting an infection in the first place. Think about like always permanently having the flu and what that does to your body, energy, stamina, mood, so on. But then when I do get an infection, my body is working dramatically harder to stop it. Mine is really bad. My immune system produces too little IgG and IgA. I am even absent of specific antibodies for three common bacteria and viruses that every one should have. They took testing farther with a blood test that I had to give at 11AM only, then it had to fly within hours to Los Angeles where the lab only performs said test. My immune system does not recognize nor can it make any antibodies for certain fungus, bacteria and viruses even after coming into contact with it. So my B cells and even T cells are kinda screwed. I even lack the ability to make antibodies for Tuberculosis so I am completely defenseless from TB.

It explains why I was a few days away from death with the C diff infection at 26 yrs old and the staph bone infection, osteomyelitis, at 8 yrs old when sepsis was setting in on both. The damage has been done after 35 years without proper treatment and my body is finding it harder just to keep from getting infections now. Interestingly, these blood tests confirmed that the bulk of my DNA ancestry is strongly Danish specifically. I think Copenhagen should cover my medical bills.

I have to get weekly infusions of IgG but not at the hospital thankfully. I can do them at home with tiny needles into my abdomen that takes about two hours. I thought cancer meds were expensive but IgG is outrageous. They cannot make it but must pool it together from thousands of blood donors. They cannot fix my IgA. With me on a high dosage, mine is $25,000 a week, $100,000 a month or $1.2 million a year. That’s not a mistake. I am serious. I only say that because that alone is what told me truly the gravity of my health problems with my immune system. At least that and the fact I cannot go longer than seven days without getting another infusion. I even had to take it to Europe. Going through security at four different airports was long and painful having to explain it with them handling $50,000 in meds.

I am continuing to get worse and it has accelerated over ten years, year after year. For the first time with all my medical issues trying to get proper diagnoses, my doctor tells me, “Jeff I think we have to come to terms on this…this is as good as it is going to get. At the least though you’re not in the ICU and with constant pneumonia.” Oh how comforting. There is nothing more they can do for me except specific antibiotics and I am already on an anti-fungal now permanently. It can be toxic on the liver so given how relatively young I am, the chips are probably going to fall where they may on my liver. They have been falling all over the rest of me. I suppose that’s why I’m beginning to tell my story if nothing more than for therapy.

Basically, the proof is upon me. I was overwhelmingly, genetically defective and screwed before I fell out of the womb.