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I've been meaning to do this post for awhile. I mentioned awhile back that since moving back to LA I have been focusing on physical therapy. When I lived in SF I did a bit of swimming, and at the beginning stages of my condition I had been involved with physical therapy that was paid through my insurance, which means you only get so many sessions and your doctor has to prescribe a new one every time.
This one is different as therapy comes out of my own pocket. I just finished my four months of therapy and I am on a break until the next session starts. I've been doing it four days a week; 2 land (gym) days and 2 water days at a place in Northridge, Ca called 'Center of Achievement' an extension off of the well known program at CSUN.
It was great. It felt awesome to feel active and to be doing something entirely for myself. The best part was AJ. He was my aquatics partner and really, we grew into friends. I wholly appreciated the effort he put into me. He is good at what he does and most importantly personally cared for my physical well-being, sometimes, even emotionally. When he could see it was a particular bad day, even though I'd try to hide it with a more cheerful self, I could see it all over his face, he knew and would be there like a friend. He seemed to really care about what he does and would think of creative exercise routines to help build or maintain certain physical areas. Swimming was probably my favorite, because you can do things in water that you can't do on land, like walking without braces or devices. For that hour, I gain an insight of what it used to be like. Most of the time we would laugh during the session, and I would tell him how if I laugh then I become physically incapacitated. So, I would do my best to focus and often day dream, taking full advantage of this temporary, hour long of movement, as if I was fully physically functional. If I was doing the water treadmill, I would try and stay, focused to avoid the tripping and not keeping up with the speed. One of the tactics I would use is, sometimes with eyes closed, I would imagine myself walking down the street, down the sidewalk as a "normal" person. It was a great place to be...
I can't express how important it is to get yourself physically active--in whatever form that may be. Do what you can and if you are an HIBM patient, or any person with physical ailment, get yourself out there and move what you can move. With HIBM it's important to maintain what you have. Even though we can't do alot of exercise, because it could have opposite effect and damage muscle or we aren't equipped to actually build muscle, it's important to not forget about yourself.
I did. I should have been doing it all this time, but I tend to concentrate too much on others. Between the work I do with ARM, the organization that is working on a treatment for my condition, trying to be there for other patients, other people, engrossed in work...etc., I tend to forget about myself. It's a good and bad trait, I know this. I guess I can't help it. I sometimes hate that part about myself...caring for others so much. I wish I was more selfish...I wish I concentrated on me more, but like Jason says, I don't usually think, I just do. Feeling other people's pain and suffering or being inspired triggers the "doing" mode and my passion or "what can I do?" comes front and center, but in a way I've heavily neglected myself through the years. It's hard enough dealing with the loss of your body, but helping those that are trying to get a treatment to surface, the burden of constant responsibility and accountability, feeling everyone's sadness and plight--is all overwhelming, taxing and sometimes drowning and lonely, because of the lack of help in this HIBM mission. How do you help others and help yourself at the same time? I can't in all good conscious walk away, but there needs to be balance. And, that is what life is all about. Finding balance and growth. Don't be completely and unapologetically self important, selfish, but don't sacrifice yourself completely, either.
So, moral of the story? Keep calm and keep moving. It's important to keep yourself going, because once it gets later in the stages you will have wished you would have done it. We may not be able to build muscle, but the little bit we can work out with will make you feel better. The release of endorphins is needed and essential. Keep yourself mentally and physically curious.
It's easy to make excuses. When we say, "I don't have time" I think that is misused. It's not that we don't have time, we just haven't made that particular thing or person a priority.
Thanks, AJ! See you next semester.
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