Several weeks ago I came home from church to find Mom sitting in her easy chair with blood all over her and all over the carpet. She had fallen and hit her head and hurt her back. That moment created some sort of paradigm shift in my existence. Where before I had felt fairly comfortable leaving her to do errands and other outings, I now felt terrified to leave her even for a few minutes.
Suddenly, my world had caved in upon itself. I was no longer free to come and go as I pleased. This would be very difficult for anyone but for me with autism it was doubly difficult. I am a wanderer. I spend a lot of time wandering around town, whether it is to do groceries, to visit my favourite stores, to meet with friends at Tim Horton’s, to just go walking. Wandering is a huge stress releaser for me. As a young adult years ago when I was having severe problems, I would find myself wandering in the middle of the night in my pyjamas around my neighbourhood – sometimes even in the middle of winter. I would often run when things got tough. I would run when things got scary. I would run when I was overwhelmed.
Suddenly I was a prisoner in my own home. Trying to set up respite was difficult and I could find noone to come in on the weekend. That meant not going to church and being in the house for 2 whole days. Just the thoughts of it made me squirreley. The first weekend I spent at home I became deeply depressed and then I came down with very sore blisters in my mouth – surely a sign of stress. After 2 weeks of this entrapment, I decided I could no longer do this as it was going to be the end of me. Part of the problem was that when Mom fell, she declined to phone me ( I ALWAYS have my cell phone with me when I go out) and she didn’t push her lifeline button. These were two safety nets Mom and I had set up to make sure she would be safe when I went out. She had refused to use either one of them when she fell. How could I trust her? I had a long talk with her about the importance of using the safety nets we had set up and I told her that if she did not use them I could not leave her. Now, she was also feeling trapped. She did not like me hovering around her and particularly did not like being “babysat” as she put it. After much discussion, we decided that we would go back to the way we had done things before she fell. She would phone or push her button and I would leave her on her own for short periods of time.
Only there was one thing I did not count on – GUILT. If I tried to leave her for a short period I felt an overwhelming sense of guilt that if she fell or something else happened it would be my fault. I had to be aware of how she was at all times. I soon realized that this guilt was partially my feeling that I had to have everything under control. I could not walk in on a scene like I had that day after church. Controlling every detail would prevent the extreme fear I had experienced that day or so I thought. But trying to control every detail was impossible for one thing and for another it was not the way God wanted me to run my life. By trying to control everything I was removing God from the equation of my life and that could equal disaster. I wanted God back in His rightful spot – at the centre of my life with Him in first place, not my act of controlling.
I had to fight the guilt and control. So I decided to take a trip to my favourite place – Value Village and NOT get someone to stay with Mom. She would be on her own. I stayed away 3 hours and they were the most anxious 3 hours I have experienced in years. I almost passed out several times from the extreme anxiety of leaving Mom. But I did it!! And Mom was no worse for the wear. Over the last week I have ventured out on my own several times leaving Mom alone. Each time it gets a little easier but I have to commit her to God’s care and ask God to help me deal with my anxiety.
So I am free to wander again. I am so full of gratitude for this privilege. And that is how I look at it now. It is indeed a privilege that at any time could be taken away again. To feel like a caged animal in your own home is a frightening experience and not one I want to repeat. I still feel trapped in the sense that I am bound to Mom for her care and well-being but I will deal with that as best I can. That is just my life right now. As long as I can wander I can experience some relief from the restraints that are on me at this time in my life. And wander I will…..