The Secret Is Out….

So the secret is out, yes I can walk, some. This post has been percolating in my head for a good long while, and while yes, my walking has gotten better in the last four months, the fact is that long term as I have said before on this blog is that I will be some level of an “ambulatory” wheelchair user. I am able to stand, and I am able to walk short distances, but it is not always the wisest decision for me. Here is a video by the YouTuber Wheels2Walking that describes a pretty similar scenario for me. I encourage you to watch the whole thing because it goes over various scenarios which you might see me and why I might be walking vs. wheelchair.

Watch this video!

Standing and balancing without a mobility aid such as a cane is definitely a problem. I can do it a bit around the kitchen where I have counters to help me balance, or my bedroom where I have my soft bed to sit down on or fall on as the case may be, but right now I don’t see myself as being out anywhere without a cane for the foreseeable future. Plus standing for long periods of time triggers my nerve pain, it is getting better but me, standing for 8 hours in a classroom without a mobility aid? Not going to happen anytime soon. Therefore, my standy girl character is almost the same as Wheels2Walking.

My cane offers me balance and stability with mobility. It enables me to get around the house efficiently, and practice my walking, which everyone agrees is getting better. Still I max out at around 200-300 feet before my balance gets so bad that I am in danger of tipping over, or seriously misplacing my foot due to my continued dropped foot on the left side. Walking is good for me, but too much in one day or at one go exhausts me, and makes me have a recovery day.

I won’t lie, I am pretty exhausted today as I had four straight days of rehearsals and gigs. That was four days of moving around in my chair, transfers (where able) walking into and out of the car (where possible) and into El Vaquero last evening for dinner. I’m pretty beat today. I slept in until about 10:30 and then I took a nap this afternoon. I’ve been pretty chill only blogging, typing some emails and I plan to do some knitting here as soon as I am done with my post. This coming week is also busy with therapies, doctors appointments and driving lessons, culminating with my upcoming pacemaker change on Friday.

So where can you expect me to use different mobility modalities? Right now here is where I am at. Am I trying to improve? Yes. Is it easy to gain back what I have lost, nope. I have to learn to adapt to what is best for me, to keep me moving in the future.

Around the home I am using the cane. If I am working in the kitchen I am practicing a bit of turning and walking without it, but my balance is crap. It is my goal eventually that most days I will not use the cane at home but I am not there yet.

Orchestra Gigs are a mix. Because I often have to walk a long distance, I use the chair to get as close as I can, then maybe cane onto the stage. In a situation like this past weekend where the stage was elevated for certain instruments, the violas kindly asked to trade with the celli so I didn’t have to try to go up to an elevated section of the stage that had no ramp available. There are a lot of “game time” decisions depending on the type of chair offered whether I sit in the chair provided or in the wheelchair to play. All I can say is it will depend on the situation going forward for a long time.

Doctor’s/Therapy Appointments. I will be using the wheelchair. Often it is a long walk into all of those appointments, and even when I am driving again, sometimes handicapped parking isn’t all that close. This is part of the reason why I need to get stronger at my wheelchair use as inside the building it is pretty good but camber and bumps in pavement have proved to be a struggle for me at times. I am hoping this solves somewhat with my custom chair, but even for experienced wheelchair users it can be a struggle. This video by another YouTube wheelchair user Wheelsnoheels demonstrates the issues quite well.

You think that pavement is smooth until you are in a wheelchair

School. For the foreseeable future, due to the unpredictable nature of students, I will be teaching from the wheelchair. Princeton as we know, is a huge building, and involves a lot of walking. The prudent thing for my energy and pain levels will be to use the wheelchair. 8 hours is a lot of “on” time and I do not teach in one classroom but several. I plan on working with the district and the Ohio Bureau of Vocational Rehab to make my music tech classroom more handicapped accessible. I hope the district will allow me to use a cane or crutch in the classroom as I feel able to, as that will be what is best for me and student learning. Still, it will take me some time to get back in the swing of things and feel out what will be best for my energy and stamina levels.

Out in the community. It will depend on my day to day energy levels and what we are doing. Most restaurants I am probably going to use a cane or crutch as it is easier (usually). Stores, more likely to use the chair as that would require more walking. I will continue when I am on my own again to use things like grocery and curbside pickup, saving energy so I can get things into my new house easier. At friends houses or at parties it will depend on how handicapped accessible their house is or not. This is where being an ambulatory wheelchair user is in my favor.

Anyway, I hope this helps some of you understand where you will and won’t see me walking in the next few months. I know there can be a lot of hate towards people who are ambulatory wheelchair users, and I just want to answer the questions among my friends and family ahead of time and why I am struggling with some bits of wheelchair life.

I’ll do more series on this as I move forward, mostly relating to how to act and how to help a wheelchair user, as these will be important going forward.

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