About Me

My photo
For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Monday, September 12, 2011

Post 32 - "We Are Family..."

On the evening of Friday, September 2, as most people were heading away from the shore, Tracey, my brother-in-law Walt and I were heading towards the shore to look at a handicapped van that I found on craigslist. Tracey and I had made the decision to buy a used van ourselves after attempting to deal with the Division of Vocational Rehabilitation (DVR). The purpose of DVR is to assist people with disabilities in obtaining or retaining employment. In my case, we were looking for some financial help to assist us with the purchase of a handicapped van so that I may continue to work. Just as I predicted several months earlier, I am now almost totally confined to a wheelchair for mobility purposes. Newly modified vans typically start in the mid-$50,000 range. Price for new vans varies depending on the make, mileage and year of the vehicle. Used vans at dealerships run around $30,000 typically, for a van that is about eight years old, with about 75,000 miles. It sounds like a rip-off to you, it is. The problem is that DVR will only provide you with financial assistance if you buy a new van or a used van, through a state approved dealership that is less than three years old, with less than 30,000 miles. Used vans meeting this criterion often cost around $40,000 or more. DVR only assist with the cost of the van modification and not the van itself. So, for a new van costing $55,000, DVR would provide me with anywhere from $12,000-$15,000 to help cover the cost of the van and probably around $8000-$10,000 to cover the cost of a used van meeting their criteria. With DVR fails to realize is that if I could afford $55,000 for a basic, no-frills, no extras, handicapped van, then I probably wouldn't need the $12,000 or so they would give me. I can even begin to explain to you, the bureaucracy and red tape involved in going through this process with DVR. And I am someone who is familiar with DVR, as we work closely with them in getting student services. I do not know how anybody who is not familiar with the system, or has limited education or a mental disability is able to get services. I am a person with a Masters degree in Social Work (not that that makes me smart but it does provide me with some insight to social service agencies) and over 10 years administrative experience in working with government agencies, and I had difficulty following the logic and understanding their process. In the end, it was just much simpler to buy something used from a private seller, at a much lower cost, and pay completely out-of-pocket. I would really love to know how much of their budget goes unused because the regulations and requirements, I'm sure, make it prohibitive for people to use. Maybe someday when I have time on my hands I will look into this. For most people who are working, it would probably make more sense and obviously be much easier to go on disability than to access these services. Luckily, we could afford to pay out-of-pocket and get something at a reasonable price. Otherwise, I would've been forced to go on disability much sooner than I would have liked. Of course, going on disability means the government is now giving me a check, paying my health insurance, and no longer collecting payroll taxes. I can assure you, the government would make out a lot better by allowing people to buy used vans from private sellers, rather than going on disability and milking the system, as I would have had to do. I hope the state of New Jersey does something worthwhile with the money that I saved them. In the end, we ended up purchasing a 2003 Dodge Caravan with 82,000 miles for $8500 (similar vans at dealerships were going for between 15,000 and $20,000, and of course, this van is not allowable under DVR regulations). The family that we bought it from was super nice and glad to see the van was going to another family that could use it. The van has a ramp that automatically extends from the side passenger door, allowing me to drive right up into the van and position my chair in the front passenger seat, which has been removed. Thankfully, Tracey no longer has to set up and take down ramps in order to get my chair into the van every time we go some place. We actually had gone to look at another van a week before this. Thankfully, my brother-in-law Walt was able to go with us that time also. Upon first sight, the van did not look like it was in that bad of shape, although it was pretty beat up. The undercarriage of the van, however, was a real piece of crap, rusted throughout and a safety hazard. Without Walt's assistance, we probably would've ended up buying that van that day. Although we consider ourselves very lucky that we were able to find this van at a reasonable price, it still had me down most of the weekend. To me, this was another $8500 that I would rather be spending (or saving) on millions of other things, rather than a handicapped accessible van. For me, it felt like I was selfishly taking money from my family. For those of you counting, that now makes over $13,000, when you include the $4500 we had to spend on the co-pay for my wheelchair, we have spent in out-of-pocket costs in the last four months. You can also add in almost another $900 to cover tax, tags and the cost of some minor repairs and some routine maintenance that we had done on the new van at Lucas Dodge in Lumberton, New Jersey The cost would have been more, but Walt (who has friends everywhere and always bumps into someone he knows where ever he goes someplace) has a friend at Lucas Dodge, who cut us a huge break on the cost. If anyone is ever looking for a Dodge, Chevrolet, or Jeep, Tracey and I cannot say enough about how nice the staff was at Lucas Dodge, and how helpful they were. Overall, I would put the total cost well over $15,000, when you account for everything else we have purchased to make life easier for me. $15,000 that could have gone to college funds, retirement accounts, much needed home renovations, family vacations and dozens of other things. This really does not sit well with me and is just one of the reasons why I'm committed to continue working.
The family that we bought the van from allowed us to drive it home that night under their tags (I told you they were very nice) and now like the rest of New Jersey, we hunkered down and waited for hurricane Irene. When the rain had ended early Sunday evening, Tracey had gone outside to survey for property damage. All she could find was some small branches scattered throughout the yard. During the course of the storm, we did not even lose electricity even though our surrounding area has many tall trees and aboveground electrical wires. On Saturday evening and again during the day on Sunday, Tracey had gone down to the basement to check for flooding. Thankfully, not a drop. We considered ourselves very lucky with our new van in the driveway and our undamaged home, wondered aloud if our luck was beginning to change. On Monday afternoon, Tracey brought some things down to the basement for storage. Still, all clear. On Tuesday, Tracey went down to get something for dinner out of our basement freezer. I heard her open the basement door, take a couple of steps, and then I heard "oh shit!" A couple of seconds later Tracey was back upstairs and telling me that we had about 6 to 8 inches of water throughout the basement. For those of you that do not know, we have a very large basement full of crap. At this moment, we had a very large basement full of wet crap. Not really knowing what to do, I told Tracey to call a plumber. I began first by calling my brother-in-law Joe, followed by my brother-in-law Walt, to see if they could come over to help. Tracey was in tears, the plumber could not come for another hour, Joe was not answering his phone and Walt was on his way home from work. I was confined to my chair, unable to do anything. Eventually, Joe was able to come over and tried to get the sump pumps working. We would later find out that one of the pumps had probably stopped working a while ago and the second one must have stopped sometime between Monday afternoon and Tuesday evening. Walt, who happens to be in sales and works for a company that sells plumbing equipment happened to have two sump pumps in his van that he was recently demonstrating at a tradeshow. Still dressed in his business attire, Walt managed to wade through the 8 inches or so of water and installed both sump pumps, so we could begin the process of drying out the basement. In the meantime, Joe, along with Tracey's father had also arrived by now, was helping Tracey get as much stuff out of the basement and into the backyard. As everyone was buzzing around me, going in and out of the house, going down and back up from the basement, all I could do was sit. This was one of the most helpless feelings I felt since my diagnosis. I felt like a lump of raw meat, and not even a good cut of meat. Had I been healthy, maybe I would have recognized that the sump pumps had stopped working, which would have prevented this mess. Maybe I would have recognized that one of the sump pumps had stopped working a while ago and had it replaced. At the very least, it could have been handling the cleanup and taking care of my home like I'm supposed to. Both Joe and Walt returned several times over the next few days, to assist Tracey with the cleanup. I really don't know what we would have done without their help. Tracey's mom and dad, along with my mom and sister, pitched in whenever they were able. Tracey, in addition to getting me up and dressed for work, driving me back and forth, and taking care of the girls and our dog (by the way, she has ringworm), cooking meals, doing laundry and everything else on her plate, worked from morning to night, clearing out the basement and scrubbing it down with a bleach solution to prevent mold.

After a few days, when we had time to reflect, we both realized that things could have been much worse and many people did have it worse. Tracey and I were both very grateful that not only do we have family that lives close, but that they're willing to drop everything to come help us when we need it. As a final culmination to the week's events, yesterday I had a slight mishap in the shower, when I fell off my shower seat into the tub. Thankfully, it was not that far of a fall and landing in the bathtub is not as bad as falling on a hardwood floor or concrete. Unfortunately, being 6'2" and falling into a bathtub that is maybe 4 1/2 feet long is still not that comfortable. To make matters worse, as I fell, I knocked a bottle of shampoo into the tub, which I proceeded to fall on, thereby covering myself and the entire tub in shampoo, making it that much more difficult for Tracey to move me. After some considerable effort, Tracey was able to get me onto my back and then into a seated position, but that was the best that she could do. We were faced with two choices. Call 911 or call Joe. I opted for my brother-in-law, who once again immediately came over. After all, what could he have better to do on a Sunday morning than get his wet, naked, dead weight, brother-in-law out of a bathtub.

I would be remiss without mentioning two more events that took place over the past week. Last Sunday, my sister Cari and brother-in-law Joe celebrated their 18th wedding anniversary. Tracey and I took the girls over to their house to celebrate with them. Sydney and Emily had one last swim in the pool for this summer with their uncle, we enjoyed a barbecue dinner and had some fun playing Wii. It was a fun, quiet evening spent with family marking a milestone. This past Friday, we also marked a milestone of sorts. On Friday morning, my father-in-law concluded more than six weeks of radiation treatment for cancer. Apparently, at Fox Chase, where he was being treated, they have a tradition of ringing bells. Whenever a patient concludes their treatment. My mother-in-law thought it would be nice if the family could get together to have our own bell ceremony to honor my father-in-law. Friday evening, Tracey, I and the girls joined my mother and father-in-law, along with Tracey's brother Walt and his family in celebrating my father-in-law's recovery. We spent about two and half hours in a restaurant eating, drinking, laughing and having a good time. As bad as I felt about myself, after laying out the money for the van and as I sat around and watched everyone else take care of what I perceived as my responsibility, none of those thoughts crept into my mind, when I was with my family celebrating life events. I think what made this even more poignant and inspired me to write about this today, where the thoughts of September 11 and what so many other families went through and continue to go through. I don't mean to sound cliché, but I can't thank the people who lost their lives that day, and their families enough for allowing me to appreciate the family that I have.

No comments:

Post a Comment