I am a member of Voice for Independent Living, a group that advocates for the rights of people with disabilities to live independently in their communities. We write to, and visit our legislator's offices, and attend rallys. The group also provides training in advocacy and community organizing.
Most of the work of the group these days focuses on programs, such as Medicare, MediCal, Social Security, and IHSS (In-home Supportive Services). All these programs, in one way or another, make it possible for people with disabilities, and the elderly, to live independent lives in their communities, and in their own homes.

In the present political, and economic climate, these programs are under attack. Severe cuts to these programs could make it more difficult for many people with disabilities, and the elderly to live at home. That would mean that many more people would end up in nursing homes. 

This group also aims to fight an institutional bias, which tends to favor institutionalization over community based programs. Although there has been great progress over the years in independent living, this institutional bias still exists. 

The group is part of Access to Independence of San Diego (A2I), a non-profit, non-residential center for independent living (CIL) that serves the city and county of San Diego. We meet twice a month at the A2I office in Mission Valley (8885 Rio San Diego Drive, Suite 131, San Diego, CA 92108). There is teleconference equipment for those who can't physically be there. We are a fairly small group and are in need of more members. The group is run by Raquel Vega, a community organizer. If anyone in the San Diego area would like to be a part of this group, please contact Raquel Vega at (619) 293-3500 ext. 236 or e-mail at rvega@a2isd.org.

Turning 45 the other day and beating Duchenne muscular dystrophy to the punch one more time has definitely given me an extreme sense of satisfaction. Again, I managed to bob and weave my way around this killer of a disease, and the grand feeling of accomplishment never gets old, even at my age. Score another round for me. Score another round in honor of my brother, Joseph, and all the other boys and men taken before me. Score another one for the entire Duchenne community. And score one for survival itself! The longer I am able to fight, the more rounds I win, and the more I am reminded to appreciate life and take each day as it comes.

This particular birthday also served as a strong kick in the pants and call to stop my impatient mind from thinking way too far ahead. Duchenne reality denies me the luxury of living in terms of years, months, weeks or days. Heck, with the shape I’m in, even hours and minutes are questionable. I am dealing solely in moments now, and my goal is to maintain my relentless desire to seize every single one of them!

You see, moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised. I remember being a mere teenager and dreaming of a future. Well, I nearly lost my life quite a few times since then, but I have survived through it all to get here. This is where I wasn’t supposed to be, but somehow I made it! This is the future, and I am fortunate enough to be sitting here – far beyond my life expectancy projected by the so-called experts – and recalling 45 years worth of moments.

Enjoying a future sure is nice, but I will continue racking up the moments, even with Duchenne breathing down my neck. I know that while this disease will ultimately steal the rest of my future one of these years, it will not be able to erase the moments that define me. And I intend to keep dreaming, doing, achieving and living because the future is fleeting fast, and the way I see it, 46 is only moments away!

At a Spring Training game a few weeks ago, my nurse James and I settled into the disabled seating area to enjoy a relaxing afternoon. A non-disabled older man, seated to our immediate right with his scooter dependent wife next to him, initiated some friendly banter with James. After all, you would expect an exchange of pleasantries with the person you’ll be shoulder-to-shoulder with for the next nine innings, right? Well, it started with an introduction, followed by the usual remarks about the weather and a little miscellaneous chitchat. But once he identified James as a nurse, the guy turned into one obnoxiously inquisitive individual, and hit him with a barrage of questions about yours truly.

What is wrong with him? What type of medical care does he require? Does he live with his family or is he in a nursing home? Does he watch television all day or does he work? Is he on Medicare? Does his wheelchair go really fast?

When you have been in the disability game for as long as I have, you expect this to happen and simply nod or answer vaguely and politely. You know that these people really mean no harm, so you often just go with it. But just when I thought that I had heard everything over the years, the next question was posed:

Can he get on the john by himself?

I about aspirated my lemonade on that one! The old dude already got that James was my nurse, that I required total care, that I was reliant upon a ventilator, had an ICD in my chest, and can hardly move a muscle. And now he was inquiring about my personal toileting abilities??? Come on! I’m thinking: Look at me, you numbskull! Do I look like I can get on the freaking toilet by myself or much less wipe my own ass! Duh!

I cannot believe the nerve of some folks! Asking about a complete stranger’s bathroom business? Are you serious? Next time I’m going to forego wearing my Yankees jersey in favor a T-shirt reading, “Got hemorrhoids?”

Unless one has been living in huge force field that allows us to move about the world pain free (that is a wonderful concept) at some point in time you have suffered from pain. I have been one of those people for quite some time that did not experience a lot of pain in my life even with having DMD. Oh how the life was when I had little to no pain; ah those were the good old days. If I can wave goodbye I'd be waving a somber goodbye to those days.

I did not start experiencing a lot of pain until about a year ago when I turn 34 years of age and earned my right to be called a DMD Pioneer. I used to be able to call these pains growing pains of Muscular Dystrophy, in fact I even used to boast about the pain. I figured hey I am 34 years old and managed to kick this thing in the face. "Ha ha I am king of the bad boys and I am not afraid of any pain, bring it on!"

I began having pain issues in my left hip last fall; I took a little Tylenol and figured that the pain would go away in the matter of hours. Then I started having pain in my lower back so I thought okay no problem with the pain in my hip has decided to move a little higher so this time I would take Ibuprofen instead of Tylenol and that would do the trick. Then the back pain moved into my shoulders and neck and has decided to take up residence there. So that was when we got out the big guns and I was prescribed Lortab which was very quickly at taking care of the pain. The pain was all gone and I figured that I was set from then on.

It was the following winter when I became familiar with real pain. My muscles begin to stiffen and my body has felt like a petrified piece of lumber left out in the elements to spend the rest of its days. I am very thankful to be living this long with this disease, but I was not ready for the pain that is involved. I have heard that some of my friends living with this monster do not have a lot of pain however some have been riddled with pain. So I began having pain that would not last long but recently I have been dealt with a hand of chronic pain. My pain has left me in agony over the last eight weeks. Last week I was almost at my breaking point and totally was consumed with depression, anger, a terrible attitude, and I just was at my wits end. I thought that God had it in for me and caused the pain. In my heart I knew that God did not do this and that he was showing me that I was stronger than it seemed. The Bible says "many of the afflictions of the righteous, but the Lord shall deliver them all."