In my mind today I have been trying so hard to find the Joy. The pandemic has driven everyone into their tightest circles possible. In my family, the circle is huge. The times of huge gatherings was not to be had this year. From March until who knows, we will miss very many wonderful gatherings or take a chance. The fragility of our health makes it harder than ever because we want to be with all of our loved ones. If I sat in my wheelchair and dwelled on this everyday, I don’t think I would have any tears left. I believe I would cry myself empty. That is why I reach for my devotionals each day. I try to feed my mind with good words and directions before I begin each day. Some days you just have to cuss. I hear you back row; you are laughing. After losing it, I turn back and ask for forgiveness. The tensions inside of our homes is real. Even in our most tenuous moments there is joy! Don’t believe me back row? Let’s take it to trial. You be the judge!
Exhibit A
Last year I got a new wheelchair. It was to be driven by my head and neck. I didn’t realize that my neck muscles would begin to atrophy before I ever mastered it. So, it sat in the corner in my room broken after I had run into a car outside and broken the drive device. The new chair sat there for a year, and I continued to drive the old one. My left arm is now weakening and I am barely able to drive with a joystick but I was still able to tootle around especially outside. Next, the batteries were running out on the old wheelchair that I was using and I was forced to contact the wheelchair people. They came to get the wheelchair and put many adaptations on it for me. After three more with months of waiting, it arrived! I was so excited to drive again without worrying about the battery dying. My dogs were getting seriously mad at me because I could not roll with them. The eye gaze system was a bit jerky but I thought hey I can do this. I did tootle a bit and then I was waiting for a day to go outside and practice. Driving with your eyes inside takes a lot of skill especially whenever you have an s curve on the way into the bedroom. Don’t you remember whenever you were learning to drive? They take you to big parking lots and let you practice. I was bound and determined to learn to drive this wheelchair. My son and I headed outside. I began to drive it down the ramp but whenever I got out of the garage it died. It would not work. It kept saying no eyes detected! We sat out there for 2 hours trying to figure out why the wheelchair would not work. It had to be me or some wire that wasn’t attached correctly. I did hit a few doors and walls in the house. Whenever we gave up and came in, it worked in the house. I had suggested that maybe the sunlight was interfering with it. So I called the technology people that created the eye gaze and found out that I was given the cheapest version available. Insurance did not think it was necessary for me to be outside driving on my own. Folks, I am not dead yet. As long as I am breathing, I want to go outside it doesn’t matter if it is 0° or 110°. This girl loves outside. It’s where I find most of my joy. It is where God meets me. After several meltdowns and conversations with insurance and technology people I believe they have approved the eye gaze that works outside as well as inside. What I had discovered was unless you have an advocate you are your own. Where is the joy? The joy was I was able to advocate for myself. The joy was now I know even more how important it is to donate to the ALS chapter because they are huge advocates of getting us what we need. The virtual race that we had this year made it possible to give a nice donation to the ALS chapter. Joy abounds. I can call at any time and they are able and willing to help me live with ALS.
Verdict: Help those who have no advocate. I guarantee you you will find joy!
Exhibit B
If you know me, You know I am an absolute nut for Christmas! I always have been. Did I always get everything I wanted for Christmas as a child? Never. But that’s okay. It was about the songs and the feeling that Christmas gives that was always what I loved. Let us not forget the awesome claymation cartoons. I was born at the right time. I still torture my children to this day and grandchildren with watching those antique shows together. I just drive my family crazy. Lists. I am list maker. Even if I cannot physically write anymore, I make lists in my head and occasionally voice to text them like I am now. I shoot those list out to my poor children. The ones that are trapped with me in this house. That’s how I think they feel sometimes! They then begin to try to help. This year the list was completely ignored. The kids started decorating without any attention given to the list. So cue the meltdown. I asked them what were they doing? Why were they dragging out all this stuff but I actually said junk? I asked desperately, “Did you even read the list?” The list was way simpler than what was going on. They were dragging out things I had not seen in years. The house was a wreck. I was a wreck. They were frazzled. It was not a beautiful Christmas scene from a Hallmark movie at all. After we all got over it (10 days later) the decorating began. They tried to back up and punt. I had only planned on one tree this year. Yes, I know it’s horrible that I have more than one tree and I am stuck in a wheelchair and I still want those trees up. The list that I had given them explicitly said one tree. I wanted the Nativity tree because that is what this time of year is really all about anyway. It was like one of those quizzes your teacher gives you and then when you get to the end it says put your name at the top and you will get a 100. Don’t worry about answering the questions. If that had been done, lots less crying and gnashing of teeth would have happened while decorating. The whole house almost came down whenever they found out I had nixed the memory tree. Needless to say, decorating is done and there are three trees up. The tree that means the most to my children is the one that is full of memories. Note to self! It is the one that has traveled with us through our lives together. It has all sorts of ornaments from friends and school crafts. It carries with it people and friends who are no longer with us. The nativity tree used to be in the foyer. The memory tree was always in the living room. It had lived with us. It was the staple tree from the very beginning. This year I flipped them. After all of the dust settled, my sweet husband who never says anything says, “I can’t believe you picked the Nativity tree. Didn’t you realize the children would be upset? The memory tree is also my favorite. It should be in the living room.”
Verdict: Don’t assume that others love the cherish same things that you do even if you live in the same household. Be considerate of their time and feelings regardless if there is a list. My list caused so much grief and wasted so much time. I should have just let them decorate the way they wanted. It will be theirs to do one day anyway. After one nasty exchange, I suddenly realized I was being over zealous with the trappings of Christmas. I felt just like the Grinch before he had an epiphany. It really only matters that we are here and we will be able to make more memories God willing. That’s it. You don’t need anything: a tree, gifts, or extravagance of any kind to find the Joy of Christmas.
Bed sores (another gift from being in a wheelchair that is stationary,) uti infections, and beyond and I could never forget to mention the near death experiences of choking. Yes we have been through a lot of falling down with our health lately. The pandemic makes it so much harder to look at the bright side of things. If this is how you feel, it is time to flip the script. You need to look around yourself and see all of those blessings. Look around and find people who need blessings. Now that you have opened your eyes, you need to get busy. You have so many gifts of joy to unwrap this advent. Here are some of the gifts I have received: fresh eggs from a friend who has a farm each Saturday delivered straight to my mailbox or my garage, surprise drop offs of pumpkin bread and pies, a dear friend who is very sick made the dressing for my Christmas meal that tastes so much like my mother’s, my children trying to make me want to live longer, my grandson who has ripped every vehicle off of every tree with a few other ornaments, a window visit from my grand girls that I have not seen in months, and beautiful Christmas cards from friends that I never knew I would be able to hear from again. These are just a few of the gifts from people who just love us. That is complete Joy. God speaks to us every single day not just Christmas. He is in the little birds that sit by my window and pick berries. He is in the squirrels that skitter and fight and play around my window everyday. He is in the playful dogs that come to my window wanting to know why I am not out there with them. He is in my children that desperately try to make everything okay. He is in the sweet husband that guards his little family so well even though he himself has lost so much. He is in the bulbs that I saved and are now beginning to sprout in my window. Every message he gives me is of LOVE and a promise of resurrection. I see things sometimes that I know are just for me from God. Students there is Joy whether we open our eyes to see it or not. What are you waiting for? Find your joy!
Merry Christmas!
Sarah Anderson Alley
Sal the ALS Gal
Quotes for the Season:
“Cover them,” he says. “I do not wish to see them.” Ebenezer Scrooge
“Bring them here,” He says. “I wish to see them.” Jesus Christ
Do you see the difference? Scrooge did not want to see the poor of the world. He did not want to feel responsible or guilty or worse not to feel anything. To you much that is given… always remember that. Jesus said bring those to me who are on the fringes of life.
Religion that is pure and undefiled before God the Father is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world. James 1:27
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