Trudging Along

The past couple of days we have been socked in with heavy snowfall. Our 4x4 truck has the ability to get us most anywhere but we’ve lent it to our son so he can get to work. Meanwhile we are content to stay at home and admire the rare beauty of a snowfall in Seattle. I am recently off my scooter and sporting a walking boot but a misplaced step on the ice could upend my plans of recovery so for once I am playing it on the cautious side. Is that gasping I hear???? Yesssirreee! I am not being reckless!

Before Dave’s stroke neither one of us had even heard of “Aphasia”, which literally means ‘absence of speech’. Nearly one third of all stroke victims suffer aphasia adding up to on million people in the US with this condition. Yikes! And we had no idea??? Well we are starting to get one….

The experience of aphasia is different for each person ranging from total disability in communication to being able to function in society. For some people numbers and letters are alien-like squiggles. Others cannot follow anything but the most simply spoken sentences in conjunction with gestures and visual aids. Still others think they are speaking correctly when in fact complete nonsense spurts forth from their lips. Dave has experienced parts of each of these in phases of his recovery but he is progressing very well to the point that most of the time he knows when he has garbled or spoken the wrong word.

Dave and I often devote multiple times daily to his speech therapy. The more we plug along on this path the more apparent it is that Dave’s goal of being able to read may take years of working hard and even then there are no guarantees. As of now he can read words here and there but stringing them together in sentences and gaining context is beyond him. We work very hard on the alphabet and he consistently repeats it correctly. As it turns out this is his strength and we use it daily to rebuild his skills. 

Right now we are working on the letters A, E, S, T, and P and simple “sight” words beginning with these letters that are taught to young children. We start with “What is this letter?” “What sound does it make?” and then try to have him recognize and pronounce words that start with the letter. Plenty of times it is arduous, tedious and frustrating...we spent over 2 weeks on the same 6 words and they still do not come naturally to him. Yet he does improve and when he nails it we both reap the reward!

You wouldn’t think there was anything funny about aphasia but you are wrong! With all due respect to Dave and his valiant struggles we have had some darn good chuckles when the word he meant to say is replaced by something else. I never laugh AT Dave (he usually doesn’t realize he has spoken the wrong word until told). I always make sure to clue him in so we can laugh together. Humor is the foundation of our life together and why shouldn’t we continue to get glee from the ironies of the situation?

Here are some of my favorite Davisms:

·        When asked what doctor he had been to see he blithely replied “My gynecologist”.

·        When telling about the “scallops and prawns” meal he ordered on Christmas Eve it came out as “scallops and orgies”.

·        It is not uncommon during a home speech session that the wrong word is spoken or written but when he identified a roll of electrical tape as a TURD how can one not snicker?

·        But my favorite Dav-ish incident came one night while playing cards with friends. I was on a roll and drawing the best cards when Dave muttered “You are so fat!” when he meant “lucky” (at least I hope he did!). After informing him that he had called me fat I decided that I too would become aphasic and turned to Dave’s partner (and my opponent) and declared “You are so stupid!”

There are so many things we are learning and coming to terms with. I know life will never be as it was before but we can still have a fulfilling and complete life even if Dave never reads again. The morning newspaper is a cherished ritual only I can enjoy for now. The daily comics were a favorite of his and I have been saving them in a stack since his stroke with the hope that he one day he will be able to take pleasure in them once again. One thing is certain: we will never give up trying!

P.S. I am currently not on Facebook and it has been a thorn in my side! Several days ago I was converting my page to Timeline and instead it converted to a fan page and left me literally unable to post, comment or view the home page or any of my friend’s pages. I have spent hours trying to solve it and FB has not helped one whit! My last choice was to deactivate my account and wait 2 weeks to re-open another one. That means I will have to completely rebuild my site and friendships but oh well….it is a new beginning in many respects! (if anyone has any suggestions please let me know!!!!)

 

Pity Party

The post below I wrote yesterday and decided to sit on the words a bit to see if I really wanted to publish them. Today I realized that I need to keep my entries as real as possible...no sugar coating! People that know me well know I shoot straight from the hip and I do not hold with tying reality up in pretty little bows or in sweeping life under the carpet. "It is was it is" and if I am to continue writing in this manner I will report our circumstances with respectful authenticity. 

But I will preface this by saying today was a MUCH, MUCH better day than we have had all week. So here goes:

PITY PARTY

I have put much effort into keeping my blog entries as upbeat as possible. People want to hear things are going smoothly and Dave is improving…and he is improving, however incremental it is, we just need to remind ourselves that it is improvement all the same. It also helps me to try and look at things with a smile but when out-of-the-blue obstacles crop up and undermine my well laid plans I end up in a puddle of glum. 

Not long after Dave’s stroke I was contacted by people who had their own stories of long term care-giving and they offered me support with their kind words. There really is no recipe for handling life changing events such as we have gone through…the only way is forward with chin held up as high as you are able. The tough part is keeping your chin up!

I have had plenty of talks with myself concerning attitude: “Cheryl, you have 2 choices….on one side is misery and the other is joy. Now which one is more fun?” The answer is joy of course and I figure if I can bend my mind in that direction it may not exactly hit “Joy” but it certainly will stray from “Misery”. Most of the time this stiff talk slaps me in the face with a good dose of “get-over-it” but lately I have sincerely struggled. The culprit is my weakened state due to foot surgery last week. I am now in the position of needing the care.

Going into this surgery I understood the stakes but I really needed to get my foot taken care of so I could move forward in my life also. I actually welcomed this as the next step in Dave’s recovery. By all accounts things should have been fine with his recent success and improvements. I thought, “How great his new independence will feel when the roles are reversed and he can benefit from being the care-taker rather than the receiver!” Not that I require that much care…but not being able to put weight on my left foot for 2 weeks makes the simple things awkward and time consumptive. 

The first few days went swell with Dave cooking dinner, doing laundry while I lazed about in a drug induced nirvana. Enter the unplanned perpetrators: first Dave broke a tooth and then he got sick. Not just a little ill but enough to have him slumbering on the couch for hours on end, drinking little and eating less. Pain and illness combined to slay his language skills and his energy has been nil. Meanwhile I wheel myself around the house trying to care for myself and him. This morning I broke down when it took me 3 times as long as it should to change the bed sheets. Jorel discovered me with hunched shoulders weeping with abandon. I was having my own little pity party and boy was I the life of the party! Or the death…depending upon your perspective. 

I have a plethora of sayings posted on my studio wall and the one I have reflected most upon the past 3 months states “Plan for the worst, Hope for the best, Take what comes.” The taking-what-comes part can leave a bitter taste in your mouth…and taking it with grace and a positive spirit is what I would aspire to but do not accomplish as well as I would like. 

So many times when I find myself on the doorstep of misery I am blessed with a perspective that makes me realize that things are not so tough. There are always people suffering so much greater than we are. Things are grim but not fatal. My situation is temporary and soon my scooter will be in the rear view mirror. I must have faith as we plug along each day with the formidable task of learning to talk, read and write that Dave’s situation will also prove temporary. At that time I will be healed and ready to jump and tumble and dance in joy!