Remember what an evolutionary bonanza opposable thumbs were? The thing that separates the primates and homo sapiens from the lesser organized lifeforms…
Well I’m de-volving. Despite my best efforts. This trip to DC highlighted some of the creeping deterioration I’ve been avoiding facing up to here in my comfy home. Over the last week I have repeatedly strained my thumb on my right hand, running from the wrist to the thumbnail, the muscles are now so weak that I can barely handle a towel out of the shower and am unable to open water bottles and the like; even lifting a fork makes my hand shake. It’s the Number 1 reason I won’t be traveling alone from now on. It’s too difficult and fatigue inducing.
I had been hesitant to write about what I see happening in my progression, but I recently recieved an email from a young woman who thanked me for doing that very thing. She had lost her father to ALS, and one of the things she didn’t get from him was how the whole process occurred for him internally. Her note reminded me of why I am blogging ~ to tell the truth about the experience of living with ALS in all it’s facets. The good the bad and the ugly.
A few months ago I had to give up food prep, and beging having cooking parties or dates with my family and friends. It’s actually been really nice – even when I only have the energy to sit in the living room while they work in the kitchen. My Dad was over yesterday and he did all the chopping for one of my famous batches of Black bean soup. He also supported me in my weekly or bi-weekly, Stanley’s Market, Whole Foods and Karyn’s Fresh Choice~ the go to Raw food restaurant in my area. We got Peonies for the table and stocked me up for a few weeks on fresh fruit and veggies and herbs. I’m making scallops in a white wine garlic sauce with fresh basil today and romano cheese over a sundried tomato linguini for brunch. At least I can stir things and plop them into a plate! I am determined to enjoy eating as long as possible!
My swallowing has been more and more tricky, I’m coughing and gagging more which makes going out to dinner a bit of an embarrassment, but I do it anyway! At least every other week, I’m out for a meal I couldn’t make for myself…even if it’s just dessert and coffee. I remember the day I found I could no longer eat oysters. About a year ago I was at my favorite restaurant Naha, and there were these amazing oysters topped with caviar and some kind of infused creme fresh, I was so excited and then they came and I couldn’t chew or swallow them! ARGH! I about cried. I was sitting with the owner at the time too! Thank God he’s understanding, and didn’t make me feel embarrassed about the whole thing. Whew.
Times like those are why I make myself go out when I can now, I’ve heard Roger Ebert talk about missing food, as well as ALS patients when they tranfer over to the Peg tube for sustenance. As a foodie and semollier I want to have alot of happy food memories to get me through what ever times are ahead with out the experience of eating. I realize it’s not the worst thing that could happen but it’s a loss right up there with speech for me.
My last report of loss of function is in my walk – I’m now almost always moving with a perceptible limp and my cane is getting used at least 3 times a week. What an ass pain. I have this game I play with myself: Be as well as possible, function as well as possible and focus on what’s working and what there is to celebrate about my health as much as possible each day. I am always focused on moving towards health and a full recovery. I dance in my apartment to club music from a DJ my houskeeper records for me! I visualize having the stamina to take long walks up and down the lakefront again. I visualize lifting again; especially now that I’m notincing a weakness in my back muscles~ the twitching just began there in my back 2 months ago, and so it goes…
I am committed that my visualizations and focus on health, and moving towards full health will at the very least slow the progression of ALS in my body, and give me the opportunity to heal. I may not have opposable thumbs but I do have my superior intellect and I’m using every drop of it!