Tuesday, October 25, 2011

Blog 9 Different Strokes for Different Folks




10/25/2011 Whenever

This one is gonna sting.

I’m not really sure where to start, so I guess I should start with correcting my understanding of information through someone else’s omissions or my own. I know things are much clearer after my visit with the Cardiologist and also entirely more vague.

Confused? You won’t be after this episode of—screw it, none of you have probably even heard of Soap.

So, in the previous blog I said that the “umbrellas” that were to be placed in my heart would do things like a) pretty much solve everything and b) you know, happen and stuff. That was not entirely accurate in a lot ways such as, “factually.”

Okay, I’m over-embellishing back the other direction now.

They are now calling my stroke something called a “cryptogenic stroke.” Essentially, this means after they run a crapload of tests (see previous blog entries on the subject of tests by the crapload) they, well, hope to have obtained more information than they have.

There’s no magic bullet here.

While the umbrella procedure is still on the table, in no uncertain terms will it stop me from having strokes in the future or preventing the complex migraines that take away my eye sight.

The best-case scenario is: eh, it might help.

Conversely, the new option on the table is to go on blood thinners permanently, stuff like Plavix. These can also reduce the risk of a stroke by going all Drano on my blood tubes.

Eh, it might help.

Which is essentially where I’m at after talking to the Cardiologist for an hour. My two options are equally preventative in that it’s a gigantic crapshoot and we have no idea if and what kind of difference they will make.

Which made me angry.

Really really angry.

I quite imagine anger almost always comes from a place where we lose control. That feeling of exasperated helplessness can only manifest itself in so many ways, and I imagine most of them involve wanting to punch a bear in the face. There’s nothing I can do, which will begin to shift to my friends and family if/when further episodes occur. That’s on top of the fact that I’ve had the same damn migraine for going on 25 days now.

Perhaps some of this comes from me trying to talk to people about particular fears and issues and being cut off constantly by a repeated chorus of, “you’re strong, man. You’ll come out okay,” and having a feeling the entire time that their world view is myopic and ignorant. Help me deal with the problems at hand. Don’t ignore them and wistfully pretend the world is gummi bears and Bagel Bites.

Sorry, had to get that last part off my chest.

So we’ve rewinded a little; back to a scarier place where the reality has a bitter flavor. It’s easy to be cynical in this place. It’s easy cue up the trumpets for the pity party and lick the frosting from your pity cake.

But then I remember.

I remember I have the most wonderful family who have done everything in their power to make this a smooth transition and to bring support and love when I have most needed it.

I remember I have a stable of invaluable friends who have come to my aid for anything at the drop of a hat, including this morning where I almost missed my appointment and Nate came to my aid and rushed me into Dallas on zero notice.

I remember I have a job that a huge chunk of the world would stab puppies to get at the best damn videogame company on the planet. A company that understands they will be seeing less of me at a time when they need to see more.

I remember that I can walk and I can see, though not how I used to, but I still have the abilities all the same. There are many who would consider me lucky.

And then I’m not angry anymore.

And then I watched Captain America where Chris Evans punched Nazis in the face.

And then I was smiling.

:)

8 comments:

  1. Hey mike.

    I'm a 29 year old developer who had a stroke as a result of a hole in my heart last year (was at bioware then, since gone to ilm and now Capcom). I had the hole closed by an Amplatzer device and all went really well. I'm on baby aspirin daily now.

    My stroke was a TIA, which mean it entirely resolved itself within 20 minutes. You had a rougher stroke, but the brain is a surprisingly elastic thing and you're young so those are all really positive things.

    I also thought I mention I owned a Delorean, so kudos on the good taste there man.

    Hope you're doing well, if you had any questions shoot them my way.

    Brad

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  2. p.s I had the arthroscopic amplatzer operation and it's also helped me avoid potential for congestive heart failure when I was older. Depending on the hole, it can put strain on the other parts of your heart.

    My cardiac surgeon was non-committal about the possible improvements I'd gain, but mainly because it was such an unusual thing to have happen. But, after getting it done they were very bullish about all the positives. Most of those guys don't want to push you in one direction or another.

    For me, staying away from powerful blood thinners was important. Different for everyone though!

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  3. Hi. My friend forwarded a story that was done on you, and I had to leave a message. I was 22 when I had my stroke (I'm 26 now), also related to a previously unknown PFO. I suffered from near-crippling migraines after (I had them before, and had no idea they could get any worse), and had many consultations on PFO closure. Ultimately I decided not to have the procedure done, given the risks and the cardiologists' inability to convince me that it would help, and the neurologists' lack of faith in the procedure. I had to do quite a bit of therapy, including speech, physical, and occupational, but except for a less-wrinkled smile on the right side of my face, no one knows I had a stroke unless I tell them. The doctors still can't say for sure what caused it, which still stresses me out to put it mildly, but I take an adult aspirin a day and hope for the best. If you have questions, or just want to know about my experiences, just let me know. I'd be more than happy to share my story.

    Antoinette

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  4. Just read about your situation on kotaku.com, did you know they did an article about you? I figure you do. I'm a big fan of gearbox games, and am a fellow developer myself in Iowa at Phantom EFX. I just wanted to reach out and say stupid things like, stay strong, it'll get better, shit like that. But really, just keep keeping on, dude.

    The only way I can relate to you is the fact that my father has had a very crippling stroke, so I know what your family is going through, but I have no idea what you are going through. Suffice to say, I hope everything works out, your health improves, the hospital's procedures work, and you can get back to doing what you love... making games.

    Nate

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  5. Hi Mike,

    I've been reading your blog since Joel linked to it on his Twitter. After reading today's entry, I showed your blog to my dad. He wants to share the following with you - I'm taking dictation.

    "Hi Mike. My name is Jack. You should find a wall in your home that is mostly just a piece of drywall and put a few holes in it. With fists or hammers or whatever. I know, it sounds crazy. Why would you want to cause structural property damage? That's kind of purposeless and self-defeating anyway (since eventually you have to fix it, right?). Except that it can be really cathartic.

    So now that I've convinced you I'm nuts, let me explain. I had a cryptogenic stroke six years ago. I was 53 and aside from some joint problems, was in perfect health. I walked into the living room to yell at my son about something and I couldn't speak. I decided that the popsicle I'd just eaten had frozen my tongue and went out to cut the hedges. 20 minutes later a crippling migraine made me pass out on my front lawn. 10 days and many, many tests later, we had the cryptogenic stroke diagnosis, coupled with a PFO and a reverse flow (like you have).

    I decided to go through with the heart surgery as well as a lifelong regime of blood thinners (baby aspirin). On Valentines day 2006 (auspicious!) the PFO in my heart was repaired. I haven't had a stroke since the initial one. My migraine went away after 29 days. My speech is almost normal after 5 years, although when I get tired at the end of the day I start slurring (which is fine, since it means it sounds like I'm really enjoying my evening). And I have some residual muscle weakness all over my body that was tied to the initial stroke.

    But good Lord, was I angry a lot after receiving that diagnosis. I couldn't (and still can't) believe that this happened to me and that there is no definitive way to prevent it from happening again. And I think I'm a pretty laid-back guy, so I didn't quite know how to deal with the anger. So after one particularly difficult options-exploring session with my surgeon, I came home, took off my jacket, and put my fist through the drywall in the breakfast room.

    That wall now has 9 major dents and 2 holes. 11 times in 6 years I have gotten so angry and frustrated at what is going on with my health that I've taken it out on the wall. But after the punching stops, I am able to take a deep breath and figure out how to keep moving, despite the dozens of unanswered questions and the lingering fear that this thing might come back and that will be the end of it.

    So find a wall to punch. Or maybe a punching bag. Hell, break a plate. My daughter tells me you make some of those video game things (sorry, I'm technologically illiterate, so you'll have to forgive me ignorance here), so maybe you could find one of those games that involve a lot of killing things and just spend a half hour shooting. But the anger is normal, as is the fear and the stress and the despair. It sounds like you've got an amazing support system in place and that you know it, so that should keep those negative feelings in check sometimes. But when this stuff gets overwhelming, find something to smash. It's amazing how much better it will make you feel.

    And if you do decide to do the surgery, be warned - it hurts to pee for a few days after. Those surgical tubes do a number on you."

    We're rooting for you, Mike.
    -Becky and Jack

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  6. Thank you guys all for such amazing comments and advice. Think I might go start punching a wall; walls are stupid and worthy of our punches.

    I had no idea there were this many people out there with similar conditions to my own. Mayhaps I have shed a light on the plight of the PFO masses.

    RISE UP, BROTHERS!

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  7. Hey Mikey,
    I was gonna go into some long spiel about how brave and strong you come across, but judging from your post, you hear it enough. So all I'm gonna say is keep your head up,bud. I went through something similar 24 years ago when I was 3 years old. I had terrible migraines, which quickly led to a stroke, which lead to total paralysis on the right side of my body and partial paralysis on my left. It turned out that I had a inoperable blockage in my brain and by the time the doctors discovered it, most of my brain was dead (I still have the MRI's where my brain is black to prove it). Medically, there was nothing the docs could do and they said that if I did manage to survive, I would be nothing more than a vegetable.  My parents did not accept what had happened to me and put their faith in the Lord. God worked a mighty miracle in my life and I'm able to sit here tonight, totally restored, and type this to you (I also have the "after" MRI'S where my brain is alive and functioning to prove it). I don't know if you believe or not, but I want you to know that God is a miracle worker and He is the same today as He was all those years ago when He healed me. Know that nothing is set in stone when it comes to Him. You have brought me much laughter over the last couple of years  and while I can't physically do anything to help you, just know that I and my family are praying and believing for a healing for you. Keep pressing on my friend and please keep us updated.
    Jam

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