I've been meaning to do this post for awhile. I mentioned since moving back to LA I have been focusing on physical therapy. When I lived in San Francisco 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 (Privatized insurance sucks).
This place is different as therapy has come out of my own pocket. But this place is well-known and well-priced. I just finished 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, California called 'Center of Achievement'; an extension of the well known physical therapy 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. We grew into fast 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 emotional.
When AJ sense I was having 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 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. I would tell him if I laugh I become physically incapacitated because it takes muscles working in cooperation to both walk and laugh at the same time. My muscles aren't multi-taskers. So, I would do my best to focus. Sometimes in this hour I would take full advantage and day dream as if this temporary movement was my every day.
If I was doing the water treadmill I would try and stay focused to avoid tripping. With eyes closed I would imagine myself walking down the street, down the sidewalk like 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. With HIBM it's important to maintain what you have. Even though patients can't do alot of exercise, because it could damage and tear muscles, 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. Sometimes I wish I didn't care so much and was more selfish. I wish I concentrated on myself 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 of "What can I do?" comes front and center.
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 lonely. Because of the lack of help in this HIBM mission I feel overwhelmed.
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 this condition graduates to later stages you will have wished you would have done more to take care of yourself.
We may not be able to build muscle but the little bit we can work 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.