Getting Real

AT ANY GIVEN MOMENT,

YOU'RE EITHER LIVING OR DYING.

YOU GET TO PICK WHICH ONE...

This post is really for Emerson and Truett, and my family.  It's my story, my journey in the Shit Ass Disease.  It's unfortunately real.  I have tried to keep a sense of humor in this disease and will continue to do so,  but this post is not.  So if you don't want to read real stop reading now.

This all started when Truett was in the hospital getting surgery for a tethered spine.  I was staying with Emerson in Brownwood, Texas.  As usual I was her personal play toy, and she wanted to play ballet/tippy toe dance.  I couldn't stand on my right tippy toe, I just thought that was a little odd but what the hell.  So 11 Doctors, 13 MRI's, 8 EMG's, a spinal tap, a muscle biopsy, so many blood test I can't count, a sleep test, psychological testing (you heard me, guess they need to make sure your not crazy), Pulmonologist, Occupational Therapist evaluation, Physical Therapist evaluation, Speech Therapist, a NVC test,  5 blood platlet infusions and of coarse we can't forget the voodoo doctor and the million supplements, all to finally conclude you have been diagnosed with the Shit Ass Disease. No there is nothing you can do about it, no you wont get better only worse.  It's not fair to my family.

 The really sad part of this is Emerson and Truett will never remember me walking, running in the back yard, pushing them on their swing, or even playing on the beach.  They will only remember me in bed and in a wheel chair and being sick.  I know Truett is to young to get any of this, but Emerson told her mom the other day she wished I could walk so I could play with her outside.  It just breaks my heart.  I love them more than life and it just isn't fair.

That was all three years ago.  At that time I was walking with a small limp. Now I have lost control of both legs and one hand, so any movement at this point is extremely difficult.   I have to depend on Mike for absolutely everything.  If I need something to eat or drink, going to the bathroom, taking a shower, getting me in and out of my wheel chair, driving me where I need to go and every single thing. I can't even scoot in bed, where I land is where I stay. I can't sit in my wheelchair for more than 2 hours or my feet swell until they are purple and look like they are going to explode. As my daughter told me they look like snauages (that's our word for sausage) So I stay in bed pretty much all the time.

So this pretty much blows! One of my daughter's friends, mother was just diagnosed with the Shit Ass Disease.  She has given up the will to live.  I'm sure after she has time, she will accept this and move on.  I pray for her anyway.   However, it isn't about you any longer.  It's about your family and the love you have for them.  I'm sure she will figure that out.  It's like being punched in the face by Mike Tyson when your told.  Every step is harder and harder. You start out with a cane, and it's so hard to purchase because you know it's all going to start.  You think that at every stage. The cane turns into a Rollater, which turns into a wheel chair, which turns into a fucking mini van,  then bed. Blows I tell you Blows!

Now here is the good part.  At the beginning of this I was floating in the pool, drinking a glass of wine (duh) looking up at the clouds and I asked God, "Why me"?  Not that I am special, but I really wanted to know why me from the bottom of my heart.  He answered me as clear as if he was floating right next to me, he said, "Silly I am giving you time with your family, those beautiful grand kids". Bam as simple as that, as encouraging as that.  So when ever I feel like giving up, I look at their beautiful faces and know that this disease is really a blessing.


Float on...
Sue "Cici" Cook