Good day. Lots done despite being slow

I am back from the MS luncheon. Wayne was doing fairly good. The president of the local chapter of the MS Society was there along with a lady named Chris, who is a rep for Serano and Pfizor. I’m not quite sure but both names are on her business card. She is a nurse with credentials for MS and knows allot about the drugs used to treat it. There is much that went on in the luncheon but I must wait to write for I need to process everything and before that I need to look up the stuff for Virginia now, before I forget again. It’s been two days I have needed to do this. I wasn’t too slow at the luncheon but having a hard time now. Better concentrate on doing just one thing.

It is 7:00 now. We have eaten dinner and Cherie got the Cool Whip I had asked for so I used it to tone down the chocolate pudding I made from scratch yesterday. Even mixed half and half it was rich. Next time I will use half the chocolate. Hey! That’s how you learn. I didn’t have a recipe for chocolate pudding so I used the vanilla one and put baker’s chocolate in it. Pretty good just a bit too much.

I am doing better cognizance wise, running about a 7 on the B scale. (Hmm. The initials for that would be the B.S. scale) Anyway one of the weird things about this brain injury is this. Sometimes it’s the mental capability that is affected where I can’t process information quickly and forget more. But sometimes, like now, it is the area of this brain that controls the physical aspects that is affected. Right now I am hobbling around like I’m 85, taking short shuffling steps. My right leg, which is partly paralyzed from the TBI, is more numb than usual and I have a harder time knowing where it is. That is why it is hard for me to go down stairs because I have to look at my foot to make sure it is on the step. Anyway it is a physical slow down this time.

Denise is the one in the middle.
Back to the MS luncheon. It is always inspirational to be there. Denise came in without her walker. She is a fighter and a gutsy one at that. Her tremors are so bad that in order to talk she had to hold her head still with her hands. I have written about her before. For Denise everything is a struggle. To get a bite of food on a fork, to get the fork up to her mouth with out losing the bite, and even to get that bite into her mouth is always a monumental task with many failures. Yet she keeps fighting. The very fact that she walked in without her walker is a testament to her spirit. Sure she had someone beside her to provide an arm for her to support herself. But by golly she came in without the walker, and entered like a marathon racer crossing the finish line in first place.

Damn! Talk about guts. Who am I to complain about anything that makes my life a little bit harder? Like I have said before, “I used to complain about having no shoes till I met a man with no feet”. This is why I pretty much force Wayne to come to these luncheons. It helps him to see these spirits and puts his situation in perspective. He has thanked me several times now for jumping down his throat for “Whining”. I was pretty blunt and told him I was tired of hearing his whiney ass. You can find that in one of my earlier entries. Just put the word whiney on the search engine at the top of this blog to find it. There are a few now I have done this with who woke up. Kind of like a slap in the face saying “Wake up”. Of course there are always those who refuse to see themselves as they truly are. These are the sad ones who have some hard times ahead.

The luncheon covered some real good stuff. It seems that the MS Society has a new CEO or whatever title he/she has. They are in the process of reevaluating the organization, what they do, and how they do it. They are asking for input from all the local chapters wanting to learn from those who are “in the trenches” if you will. Now we get street level. I will be writing Wayne’s story and giving it to Jacqueline Pratt, the chapter president. She will be taking this, along with her other stories and concepts to the national headquarters.

Right now Wayne is writing an outline that I will work with to tell his story. When it is done I will also publish it here. I explained to Wayne that this will help develop policies the MS Society will implement on a national level and will also be used to encourage the Federal government to make needed changes. “Wayne, this could help thousands of others with MS not go through what you did” I told him. He is excited about this and when I talked to him a few minutes ago he said he already had three pages written.

The reason I talked to him a few minutes ago is that I got a call from a lawyer in Kentucky. One of the women at the luncheon, who’s name I can’t remember (but she’ll forgive me) gave me this lawyer’s name and number. Her name is Sally Edward and she only takes MS disability cases. It seems her husband had MS and died because of it. I don’t know for sure because I only talked with her for about five minutes but the problems he went through with his disability may have inspired her to do this. She agreed to take Wayne’s case even though it involves an eight hour drive to get here.

When we got done talking she called me an angel. I was getting a similar input at the luncheon. They asked me why I was working so hard for Wayne, or something like that, I really can’t remember how it was put. I told them what I have told many others. “It’s because I died. When I woke up from the coma I had a month to lay there and think. My life is a gift and I am giving that gift to as many as I can. I used to be a successful businessman and then I was carrying everything I owned in a garbage bag. That helped me reevaluate what really matters in life. Money and things will vanish away. The only thing that lasts is the lives you touch”. It is a well rehearsed speech now but remains the core of what I believe and is the truth. I’m not real comfortable with being called an angel and stuff but it feels good. Besides that, at one time in my life I was called allot worse than that. Angel is allot better than asshole though some still call me that.

The drug rep gave me some valuable information about programs the drug companies have to provide medication for people like Wayne who are basically poor. All Wayne has is foodstamps and $115 a month that I fought Family Services to get for him. Not much to live on but I also got him his section 8 housing which only costs him $35 a month with his utilities paid for. Everyone else at the luncheon (all but two have MS) have medication specifically for MS. Wayne gets nothing but a pain killer and muscle relaxant. I’ll make sure that will change.

This is Virginia with my grandmother.
I reckon you can tell I am doing better cause I’m writing so much. Oh yeah! I did find that stuff for Virginia. We talked for a long time. Just looked on the cell phone and it was 48 minutes. I never talk that long but Virginia is different. (I know you’ll read this Virginia so Hi) She is becoming a good friend and is someone I have great respect and actually admiration for. Virginia has done much at great personal sacrifice for my grandmother, who is her mother’s sister. I get confused how this all works but Virginia said she is my second cousin. All I know is she proved trustworthy and for me trust is on the top of the ladder.

I suppose I should call it a night. Cherie and I still look into each other’s eyes with wonder at the miracle we are together. It is and always will be an amazing thing. I told her again that I have never been this happy and never imagined I ever would be. Cherie said she had just given up, lost all hope of being truly happy. God we are blessed. Good night all. See you tomorrow.