hello world

thank you for your support and for keeping me in your prayers. when i see all of your comments on the blog i feel energized. reading all of your words takes me to places i cant go right now because i am so restricted. in a way its like being in jail. kind of. sometimes its hard to think of what to say but what i have learned is that life is short and there are no guarantees it is hard to remember how i feel sometimes but if you ask how i feel about my recovery i feel like a bull. as long as everyone has hope it keeps me alive. i really do mean keep hope alive it is my slogan

The oatmeal challenge

The day began with “what would you like for breakfast?” –  ”I think oatmeal would be good” Mike said.   I suprised him with “ok, have at it.  I’m going to grab some coffee while you make your oatmeal”.  This was a huge challenge for Michael.   The steps went well; the oatmeal, the bowl, the measuring cup to fill with water and then to the microwave.  I’ve watched Mike make oatmeal before and it pretty much went like it would have before, just took alot more planning.  The measuring cup was a pyrex 2 cup and he filled it all the way up.  “Mike, do you think you’ll need 2 cups of water?”   No, probably not”  but he continued to fill it up anyway….he couldn’t stop.  but it was ok.  Without asking any questions, he pushed the quick cook #2 and the microwave started.   The water boils and I get nervous.  mike opens the door and heads to the counter with the boiling water….and just as I thought, begins to pour the entire 2 cups into the bowl.  I intercept and ask if he wants to keep pouring.  mike starts to laugh and says “help I’m pouring and I can’t stop”.   It was funny but in all seriousness, making the oatmeal wore him out.   

The cognitive difficulties will have the most significant impact for regaining Mike’s independence but you can see that his brain is finding new pathways.  So with repeated stimulation through practice and retraining, mike’s planning and sequencing skills will continue to gain strength.  ”A journey a thousand miles begins with a single step”.

Today this 23rd day of January was a huge day for Mike.  We began the day with the oatmeal challenge and then moved on to the computer.  This morning as Mike and I were going over the calendar, I asked if he felt like looking at the website and checking the comments.  He said “sure’.  I pulled up the site and Mike read the last 18 comments out loud to me.  When we finished he said that he would like to email Jimmy to say “thanks”.  He then followed with “I think should probably thank Amanda and Steph too”. I explained that he had a couple of options if he wanted to send a message via the Internet.  He could email them from Gmail, he could post something on his My Space and then he said that he couldn’t log in because he didn’t have a user name or password.  I told him that I knew his password for Gmail and that we could probably figure out the My Space account.  He said he was talking about the blog.  That he would like to say something there.

I quickly sent Jimmy an email asking if he could set Michael up with a user name and password.  Jimmy came through with the goods within minutes and Mike was able to log in and begin to put his thoughts to the test.  I’ll back up a little – after he read the comments from the blog to me, we also looked at the cluster map and talked about how the entire world was following his progress.  After Mike logged in, I asked him if he had anything in mind that he would like to say.  He said “yes, hello world”.  The rest of the post took him about 15 minutes to put together and he really put quit a bit of thought into what he wanted to say. 

It was amazing to see him go through the process of getting thoughts together.  He was fidgety, he rubbed his head where the bone flap incision was during the thinking time in and the result was the huge message he was able to post.  He spoke, I wrote.  He wanted to type it himself and tried at first but the keyboard proved to be too confusing and he couldn’t navigate the keys for more than a minute at a time.  I told him we could either take a break or I could type it for him.  He opted for me typing so I continued as he had started.  no capitals, not too much spacing and spell check was invaluable for the first few lines he typed himself.  He was so proud of himself.  You could tell he felt re-connected to the friends he loves so much.

I laughed out loud when he said “I really mean keep hope alive, it is my slogan “. I asked him if he knew who originally said Keep Hope Alive, Mike said that he did.  I said, “no…I mean like whose slogan is it?”  He said “it’s mine”.  He didn’t believe me when I said it was Jesse Jackson.  I’m still not sure he believes me…

CRS

You know what that means right?  I have a bad case of it.   Mike reminds me all the time that he’s not the only one with short term memory loss.   Just a quick note to all the people that don’t get returned phone calls…please don’t take it personal.  It’s not you.   It’s me.

I’ve been working on a photo album that I hope to share with you.  In the next day or so I’ll work with jimmy to see if we can link it to the site.  I know new photos will mean so much and especially to those of you that are miles away.  xxoo my lovely.

Michael has been working on his penmanship to help accomplish our goal of sending out the long over-due list of thank you cards.   Not that you could ever tell what Mike’s name was by his signature before (and you still can’t), but that signature will be his none the less.  

The last couple of days when Michael starts to get tired toward evening, he gets giddy.  He’s always had a great sense of humor but now you can see and hear it coming.  The laughter starts before he can even get the words out, so watching him try to speak and deep belly laugh at the same time, is priceless.  We’re having so much fun – I only wish he could remember…

I see glimpes of doubt,  twinges of sadness but for the most part his spirit is positive and he is determined to conquer.  With heads held high, you look forward and you don’t look back.   Michael said last week that “this is the new Mike”…how many people get the chance to re-invent themselves? 

We don’t really talk about the length of recovery or the prognosis, we just talk about the incredible strength he has, how wonderfully far he’s come and about how blessed we are.  No matter how bumpy the ride, it is an honor to be a part of this miraculous journey with him.

xxoo