Friday, November 2, 2012

Learning how to cope...

Hello Everyone,

I've been meaning to post but just haven't been able to come up with the words... To put it mildly, the last few weeks have been rough. Nicole finally got over her pneumonia and is in her own brand new suite at RIM (rehabilitation institute of Michigan). She's right handed and unfortunately, that's the side that has been affected. So, not only is she paralyzed on that side (including her vision), she suffering from Apraxia and Aphasia which makes it really tough for her to speak. She had a subcortical stroke and there is a chance she can recover... Thankfully, she has some wonderful people working with her with the hope that she may regain some of her functions. Nobody is able to predict how much she'll be able to get back. That said, we've all been there to root her on. As you can imagine, she's majorly disappointed and needs encouragement and support.

I've been trying to put myself in her shoes and with everything I've been through, nothing compares to what she's having to deal with. I lost the use of my hands, feet and most of my strength with Guillaine Barre so I had a taste of what it'd be like but I was still able to take care of myself mostly. With her situation right now though, she is totally dependant on the rehab staff and us for everything. When I say everything, I mean everything and it breaks my heart.

Through all of this though, she still manages to smile and laugh, quite an amazing woman I must say. There ought to be a picture of her face when you look up courage in the dictionary. The biggest tragedy is that she decided to undergo this surgery with the hope of a better life after her epilepsy got so bad. She had dreams of driving again, building up her social life, maybe even working again...

My hope now is to watch her walk out of RIM and we'll see what happens from there. She's already made some important incremental "steps" in different facets of her recovery and we're all looking forward to celebrating with her as she continues down the long road to recovery.

Other than trying to keep my disease at bay, her getting better is my main focus in life right now.

I also wanted to honor my friend Marsha Privalsky who tragically passed away recently. We were diagnosed with Hodgkins right around the same time and would root each other on as we went through a very similar treatment timeline. She was quite the fighter and a major inspiration to me as I went through all of my crap. Condolences to Bob and her family. She will be missed by many.

I will try and update as time allows (and my computer holds on as it's on life support rt now).

Thanks for reading as always.

Chris