PICTURE A SLOTH

A couple weeks ago I recognized that when I’m transferring from wheelchair to the couch, or wheelchair to bed that I tend to move so slowly that I resemble a sloth!  It gets pretty funny sometimes. Things are constantly changing here. Lately I drop my finger foods, I can no longer feed myself with a spoon or fork even with adaptive devices, and I no longer walk or drive.  Mike does it all.  Those of you who spent time on an equipment truck with him or on a stage set up with him know that he does it all.

Along with difficult news comes wonderful news too.  Last week we had installation of our Vertical platform lift so I can be out and around the house. Today I went outside in my power wheelchair for the first time in months.  Chilly or not I enjoyed the hell out of the journey.

At the same time, I got a stair lift to help me get down into the basement. I was curious about getting down in the basement for practical purposes, but then last night we had tornado warnings, and I realized that until now if I wanted to get into the basement storm shelter, I wasn’t gonna be able to get there. Now that has been solved, and fortunately there were no tornadoes.

Now we have a valet seat installed in the pickup truck. This makes it much easier for Mike to load me up when he needs to take me out somewhere. The truck seat automatically comes out, rotates, and comes down to the level of my wheelchair. Amazing! And it comes with a remote control…

Even though life has gotten a lot more complicated, I am seeing my therapist and trying to focus on maintaining as much autonomy as possible and managing my anxiety and depression as best I can. We revisited those goals and are trying to look at what would managing anxiety and depression look like? How would we measure it? Psychologists out there know how to answer this question.

We had the kids here for Thanksgiving and Christmas and had a great time. My son and his girlfriend stayed with me while Mike went to a gig in Mobile. Having my son and his girlfriend get me from place to place and help me in the bathroom has been a humbling experience, but I am forever thankful that I have family members who can step up and are able and willing to do what I need. This whole process has been very humbling.

Although the weather has been chilly, it also brings out the deer. I have missed being outdoors and seeing these things firsthand, but my son told me that he saw a deer in my neighbor’s backyard. When the deer spotted him, it leapt into the pond and swam across to the other side and headed into the woods. I must say I’ve never seen a deer swim and I missed this one. But it gives me something else to look forward to. We have a beautiful place to live and I’m grateful. We have family members around and I am grateful. The outpouring of love and support has been amazing. I often feel sorry that I’m putting Mike through this, and his family and my family through this. But then I remind myself I didn’t choose ALS — it chose me.

Now that I have access in and out of the house, I plan to do more living in the moment. Spring is on the way, and I’m looking forward to all of the things that are gonna start popping up out of the ground. We also have a wheelchair van in our near future. So trips out and about are gonna be easier. Maybe I’ll run into some of you out there. You never know.