I believe it was August 8 that I found myself alone in my house, which is not so common for me. I decided that I would grab myself something to eat while I caught up on some emails. I sat down to eat, and as I try to get into my mailbox, I realized that my Wi-Fi wasn't working. Since all the computer stuff is upstairs where I can't get to, I started to think of some other things I could do which included reading a book, or writing in my journal. Then, the thought came to me ,"I bet I can get upstairs somehow and reset the Wi-Fi..." I had actually wanted to find a way to get upstairs by myself for a long time, but knew that if anyone were home I would not be allowed to (because of safety reasons or something).
So realizing that this was a prime opportunity and a rare one, I zipped over to the staircase and transferred on to the first stair and began the process! I have to admit, I was pretty excited about the whole thing. I tried to stay close to the banister so that I could hold on if something slipped to make sure I didn't fall. I also had to take special care of my legs to make sure that they didn't flop all over the place, which is actually always a challenge because they're so long. I quickly developed a nice, safe pattern for slowly transferring up one stair at a time. Over the course of about 15 minutes I made it to the top! I checked myself for skin issues to make sure I wasn't too red anywhere, and continued my journey across the upper floor landing, up a few more stairs, and to the office chair at the computer where all of the equipment is. I did some nice big scoots (I don't go to physical therapy for nothing), a few more transfers and got up into the chair. SUCCESS! I was quite pleased with myself seeing as this was another first. It was a pretty enabling feeling.
I'm not sure why, but I often imagine myself in strenuous circumstances and ask myself if I could realistically survive. So I will be sitting in the van or something and suddenly think, "What if I didn't have my wheelchair, and had to survive alone in my house for three days? Could I do it?" Then I mentally go through the steps. "Well, I would have to transfer out of the car and onto the cement. Not a problem… I would just have to worry about skin problems, but I could just throw this here blanket down first. Perfect. After that, I would have to scoot my way over to the stairs, up to my front door and get in that way. Cake." After that I have to consider what I would do to get food, water, etc. "Once I get inside, I would easily tie a pillow to my bottom so I wouldn't have to worry about my skin, and then I would be free to scoot wherever I needed, even on hard surfaces. I could probably get food out of the fridge, but only veggies and condiments would be within my reach. That being said, if I didn't want to live off of celery and mustard, I would have to find a way onto my counters or something."
That's how I go about thinking. Now that I've conquered the stairs, I can realistically add another dimension to my level of accessibility. I'm sure all of this thinking is motivated by some underlying fear that survival would be a little more difficult than before… but oh well.
Unfortunately, my mission was only partly successful because when I got up to reset the Wi-Fi, I found that it was broken and unfixable at the moment. I decided I would take advantage of the journey and listen to some music (a Vivaldi concerto) and type away at a new blog until someone came home. Eventually my parents did come home and I proudly told them that I had mastered the stairs. I began my descent, and as I started down the very top step I realized that this process was going to be much more difficult than the ascent. I was about six steps from the bottom when my left leg flopped over and began to pull me down the stairs with it... Remember, no core. I tried to sound casual and called my mom to see if she could come over and fix my stuck leg and luckily she was close by to help.
I was a little bummed that I needed help at the end, but it was better than getting injured, I suppose. I had her take this photo, celebrating my upstair dominance.
I also wanted to use this post as a way of giving an update of how things are coming along recovery wise. I always wish I had some new amazing function I could announce, but such is not the case. I keep remembering what they told us in the hospital. They told me, "The recovery of this injury will be like a marathon, not like a sprint." That has been exactly the case, and I continue to struggle with that reality day to day. I have never worked at something harder then I have my recovery, and I have never had something return so slowly. I am used to making progress much more quickly than this. Needless to say, this is trying my patience. I've learned that just because I have to wait (because I'm forced to) doesn't make me a patient person. Patience is waiting well, which is something I am only recently realizing that I truly need to develop. So I'm working on that along with the rest of it.
In terms of physical recovery, my hands are recovering more quickly than anything else. I feel very grateful that I have the strength and dexterity that I do. It's far from perfect, and many times not functional, but I believe that I will have most of it back at some point. I enjoy playing the flute more than I ever have since my injury, and I am able to play longer and more fluidly. There are still times when someone in my family will be playing the piano, or when I will be listening to some beautiful music and feel a huge desire to play like I used to. It hurts to know that I'm literally incapable of doing that right now, but I hang onto the hope that one day I will play in the way that's pleasing to me.
I go to physical therapy as often as I can, and still enjoy it. There are times when I get frustrated because of the slow pace like I mentioned before, but I love the environment at Neuroworx and have fallen in love with the staff there. It's a place I like to be. It also feels good to get my heart rate up as much as I can. I still work a lot on my core muscles and try to build general strength throughout my upper body. I continue to have sensation return through the right side of my torso as well as in some scattered parts of my legs. It is very faint tingling, but it is feeling nonetheless.
I am recognizing the continued need for independence and I strive for that goal every day. I have become far more independent in my daily needs and personal care, including bowel care, which is a huge deal for me (and probably my parents ;)) I am also feeling the need to incorporate more of the things I used to do back into my daily life again. This is all happening just a step at a time.
I continue to seek happiness, which honestly often alludes me, but I continue to seek all the same. I get down, I get angry, I get depressed and anxious, and I definitely get hopeless, but I don't give up. Ever. I'm not sure if it's my pride (ok, I'm sure it's part of it), my intense competitive side, or simply denial but I refuse to surrender. Not because I want to feel heroic, but because I want to prove to myself that I'm in control. I want to prove that I, not the stormy sea, am still captain of this ship, On an especially hard PT day when I don't feel like I'm accomplishing anything, I envision myself pointing a finger in the face of my injury and saying, "You just wait. This isn't over. This game isn't over yet."