Two years, tonight

It's been a very confusing, interesting, frustrating, wonderful, terrible two years. Two years ago, 29 November 2006, late in the evening, the landmine went off in my head, and nothing's been the same since.
Some things, like my relationship with Christine, are as good, if not even better, than it was.
My employability is about zero, but I find things do to, and some of them even make me money.
My friends, mostly, have continued to support me.
Life, all in all, ain't bad, and it sure as hell beats the alternative.
Keep a watch here (or at Rico's Rants) for future events.

Two years, soon enough

I continue to fall into the gap between sadness over what I've lost and amazement at what I have.
The best thing, of course, continues to be my lucky association with Christine; not only the founder of this blog, but my savior (literally and figuratively). Without her, no Mark, no blog, nada. I am truly blessed.
I just returned from a whirlwind tour of the Northeast with my father (who, like Chris, had to do all the driving), visiting relatives (his and mine). They were, in chronological order:

Richard and MaryEllen Wilson (he's my cousin on my mother's side) in Cincinnati, Ohio (we flew into Columbus and Dickie, as he's known in the family, drove us down and back).

Carol Jones Tama and Larry Tama (she's my father's cousin) in Blossburg, Pennsylvania.

Larry and Sue Frey (he's my cousin and my father's nephew via his sister) in Hastings-on-Hudson, New York.

Mimi Palmer (she's my father's relation) at Schooley's Mountain, New Jersey.

Dorothy Jones (she's the second wife of Morton, my father's uncle, and step-mom to Skip Jones) in lower New Jersey; we had dinner with her and Skip and Yung-hui Jones (he's my father's cousin; she's his wife from his time in Korea).

It is good to have such wonderful relatives, direct or indirect; they are all incredibly nice and kind people.

Better yet, if still slowly

It's mid-October, and things inch along. Christine continues to take care of me in all ways, thank goodness, and I continue to improve, if by tiny increments. We have two cats now, both foundlings, and they provide daily merriment and comfort. I was never a cat person, always having had dogs, but I'm becoming one thanks to them. We're still awaiting more input before this goes off to become (hopefully) a book. I shall report progress as it happens. Thank you for your support.

Better, if slowly

Chris posted this back in May:
"He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear... I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to... Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too."

It's August now, a year since I got off the drugs, but things haven't changed all that much, alas. I still have problems concentrating, but I still sound good, so everyone thinks I'm fine. I don't get to see my friends as much as I'd like (they've got lives, too), so I still contend with isolation and loneliness. Fortunately, Chris hasn't given up on me (thus far, anyway; day's not over yet), and I'm still being cared for better than I deserve. We're still awaiting input from one of my docs and the head of the Angioma Alliance to put all this into a book (which I now owe to a lot of people), but we'll get there eventually.
It's been a long strange trip, and it's still strange. But now that I'm going to live, I will have to figure out what I'm going to be when I grow up...

Even Congress noticed

Seems there's been a move to increase education about my condition (always a good thing).
My ladyfriend, always vigilant, found this:

110th CONGRESS
2d Session
H. RES. 1193

Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.

IN THE HOUSE OF REPRESENTATIVES
May 13, 2008

Mr. UDALL of New Mexico submitted the following resolution; which was referred to the Committee on Energy and Commerce

RESOLUTION

Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
Whereas cerebral cavernous malformation (CCM), or cavernous angioma, is a devastating blood vessel disease that has enormous consequences for those affected and their families;
Whereas cavernous angiomas are malformations in the brain that cannot be detected easily except through very specific medical imaging scans;
Whereas those with a cavernous angioma should not take blood thinners or aspirin, but are rarely aware that they have the disease;
Whereas in the general population 1 in approximately 200 people has a cavernous angioma and about 1/3 of these affected people become symptomatic at some point in their lives;
Whereas there is a hereditary form of the illness, caused by a mutation or deletion on any one of 3 genes that is characterized by multiple cavernous malformations;
Whereas each child born to parents with the hereditary form of the illness has a 50 percent chance of having cerebral cavernous malformation;
Whereas a specific genetic mutation of cerebral cavernous malformation called the common Hispanic mutation has been identified, has been traced to the original Spanish settlers of the 1590s, and has now spread down and across at least 17 generations of families;
Whereas the State of New Mexico has the highest population density of this illness in the country, but Hispanic families and those of all other ethnicities throughout the Nation are at risk;
Whereas a person with cavernous malformations may go undiagnosed until sudden death, seizure, or stroke;
Whereas there is a shortage of physicians who are familiar with the illness;
Whereas this shortage makes it difficult for affected individuals to receive timely diagnosis and appropriate care;
Whereas the shortage of physicians who are familiar with the illness has a disproportionate impact on thousands of Hispanics across the Nation; and
Whereas cerebral cavernous malformation has been understudied by the National Institutes of Health and others: Now, therefore, be it

Resolved, That it is the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.

How it is now

In light of some recent phone conversations and emails between Mark and his friends, I think it's time I post an update.

It's been one year and three days since Mark came home from the rehab hospital. For those of you who've kept in touch via phone and email, you have probably noticed Mark's most glaring deficit, short term memory loss. You may have gotten phone calls, back to back a few minutes apart. It's not that he forgot to tell you something, but in those few minutes, he's forgotten he's called you at all. You may also have received the same email more than once. These things seem to happen to anyone who's had a head/brain injury, even something one may think is not serious, like a concussion. Believe me, no brain injury is minor. Even though Mark's brain injury was not caused by trauma (i.e. traumatic brain injury) it is none the less classified as a brain injury. Although his short term memory is getting better, it will never come back 100%. He will ask about someone he thinks we haven't seen in a while, although we were together for dinner the previous night. He also has a problem with time. Events from yesterday, last week or last month are all merged. It's worse when he's tired. One of his other deficits is disorientation. He gets easily confused especially when he's not in familiar surroundings (home). He says it's like being drunk, all the time. He's a smart guy and he covers up pretty well, but if you're around him long enough you'll notice his confusion.

He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear.

I sometimes find him asleep in front of his computer, watching tv, and almost always in the car. He still has wakefulness issues (from the original brain injury).

Mark has gone through additional hard times too. A bout with suicidal thoughts in the spring (we had to make sure his guns were out of the house) took him into therapy, a prescription for an anti-psychotic drug, and an antidepressant. It was recommended that he attend a 40 hour per week out patient program for suicide prevention but it was determined that he couldn't keep up with group therapy because of his cognitive problems. The alternative was to continue with outpatient rehab, additional appointments with a neuropsychologist and a psychiatrist, and be under 24 hour supervision at home.

When Mark was weaned off of all these drugs in late August, he went through a manic phase, sleeping only a couple hours a night and he was very difficult to deal with for a couple of months. That was a really rough time for both of us.

His vision will probably never get better and he'll probably never drive again. This also causes balance issues which make it almost impossible to cross streets (his reaction time is also a problem) and there are few sidewalks around here. He's totally house bound unless someone is available to pick him up and drive him places. Now that I'm working full time (since mid December) he likes to get out at night, just when I'm looking forward to some downtime.

Mark did get his prism glasses a couple of weeks ago and we were very disappointed to see that they didn't make his vision much better. The doctor told him that if he holds his head at just the right angle (we're still trying to find that angle) a small amount of vision in the center of his field of vision will line up. The the rest will still be doubled, half at an angle, at that. And when it doesn't line up, it makes his vision worse than without them. We had been holding out so much hope for them to restore his vision and are now facing the fact that nothing will work. I think we believed that his double vision would be alleviated with the glasses. No one ever told us how little difference they would make.

Mark has also been seeing an acupuncturist for a couple of months to no avail. His next alternative will be a black contact lens - which, if he can get used to it, will be an alternative to his patch.

I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to.

Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too.

As some of you know, we adopted a cat named Flora last September and we recently found a four month old male kitten who we've named Bud. Mark enjoys their company immensely. It's made a big difference in his life. He sends me text messages at work of their antics.

The one thing we're holding out hope for is that he will never have another bleed, although the neurosurgeons have said it's not a matter of if, but when. Luckily we've been told that his chances for another bleed go down with time.

Chris