Wow! Today was the perfect day for my first day home from our trip. Kathy was here, working her magic as she does, cleaning up my messy apartment, helping me clean myself up, making a terrific breakfast for me. She's taken to using herbs from my herb garden along with tomatoes and peppers from their respective plants on the deck. It was a fabulous breakfast and a great start to my day.
I'm going to need a couple of great starts. The change from road rules to home rules is already upon me. I have to go grocery shopping. I have to do laundry. I need summer shorts, so a trip to WalMart or Costco or something of that order is necessary soon. I am compelled to clear my own table after eating, make my own coffee, tidy up and set up and take down and put away as required. There is no room service, no helper on hand. It's quite the shift.
Yet still, as much as I love travel, I am happy once again to be home, to fall into my safe and steady routine. I am happy to use the slings and commode chair that work for me. I am happy to be in my queen sized bed with two M-rails, one on either side. I can roll over in bed safely. I am happy to have my bidet seat on my toilet along with a shower well designed for my needs. I am happy that I can get a drink of whatever I have whenever I want, although I do wish I could get beer on tap, particularly an Irish Ale.
It looks like travel may not be much of my future in the future. I will fight that, working tirelessly to keep active and alive. The problem is that it takes so much to help me, so much to care for me, that one person is probably not enough any more, unless I take a portable sling and such. I'm not okay with this. On the other hand, I am happy here at home, so I really don't have much to complain about. Instead of going to see people and places, I will have to ask people to come and see me, and watch documentaries about places I would like to go. Thus is life, for me, living with ALS.
Richard, thank you. Thank you for sharing your story. I found your blog via google while looking for info on wheelchair accessible attractions in the Maritimes. We will be travelling there next week with our children, three of whom use wheelchairs. Thank you for your candor about life and even your sharing about your friend David who joined you on your recent trip. It helps in an odd sort of way and brings a sense of solidarity. One day we will be asking for support as we travel and the reality of sharing our kids and the minutiae of daily life with others is a complex thought. We never want to limit our kids adventures in this world and for as long as we can we plan on letting them explore it.
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