Many of you will already know this, some not, so I am taking this opportunity to share with you the GoFundMe campaign which my friend David has started to assist me in getting a wheelchair van. I struggle with this, the constant need to ask for help with so many things in my life. Some of my pleas are active, some are passive, but any time I ask for help I feel diminished. In part that is why David is doing this for me, instead of my doing it for myself. It's is a bit of emotional sleight of hand, where I can convince myself that its not really me asking.
This particular need in my never-ending emotionally and financially sucking wound of needs is really about getting me out of my apartment more. Like a fool, I had this ridiculous belief that all and sundry would be more than willing to heft me into my truck, load my wheelchair into the back, and take me somewhere, anywhere, on an ongoing basis. Of course that was just wishful thinking. My truck is large, intimidating. I am large, also intimidating when it comes to transferring me in and out of the truck. So far David has been the only one willing to take on this burden.
When I bought that truck, it was the one I had wanted my whole life. It's big, big enough to pack full of gear for hunting, fishing, camping, whatever I wanted. It's powerful, strong enough to pull a travel trailer for getting out into the bush, strong enough to haul a flatbed with a quad and camping gear, strong enough to haul all of that plus a large moose out of the woods, strong enough to haul my sailboat on a trailer from here to the Gulf of Mexico. It's a four wheel drive, capable of handling the most difficult of back woods roads.
Unfortunately, thanks to ALS, I've never gotten to use it as I wished. On the other hand, it is a great truck for road tripping, with lots of room in the back for wheelchair, commode chair, ramp, hoyer lift, luggage, medical supplies. I've done lots of road tripping with it. Alas, I can do no more, or very little more. Getting me in and out, along with getting my wheelchair in and out, has become a substantial barrier.
So it will be sold, likely over the next few weeks. The problem is that a wheelchair van with similar mileage and appropriate configuration will cost more that $10,000 additional to what I will get from selling the truck. My biggest fear is that I will sell the truck and end up getting nothing at all, simply because of cost. David assures me this won't happen, but the fear remains.
I wonder what will happen if I get a van? Will more people take me places, since it will be easier to get me in and out? If I actually really get a live-in caregiver, will he or she be able to drive it? If it's rigged up for assisted hand controls, might I even be able to drive once again? I love my truck. Will I feel that same kind of satisfaction from a wheelchair van?
I don't know any of this, and that fear is causing a kind of stasis. I am afraid to sell the truck for fear of not getting something else. I am afraid to sell the truck because, well, it's the truck I always wanted. I'm afraid of change, particularly if it brings no improvement to my life. I don't know how long I am going to live. I am certain I will want to live longer if I regain this kind of mobility. I also know that I will still continue to be dependent on others to drive me. If I do nothing, nothing bad will happen. If I do something, well, I don't know what will happen. I'm afraid.
have you reached out to team Gleason?
ReplyDeleteNo. I am in Canada. I suspect their focus is on US needs.
Delete100% yes! People will come and drive you around if you make it EASY for them! So def do it!! It will change your life!!
ReplyDeleteWhen you get a MINIvan, here are a few pointers:
First, go for a used one off of craigslist. You should be able to find something with lowish miles, less than 10 years old for a quarter of what they go for new. Sorry to say it, but you will see a lot for sale on there by people with spouses that have recently died of things like cancer, Parkinsons, ALS, ect. They need to unload them and it's a buyers market.
Like any other car, do a carfax, get it checked by a mechanic, and do your homework. Toyotas and Hondas seem to be better.
Second, IF AT ALL POSSIBLE, get one with a MANUAL fold out/fold down ramp (or an automatic one with a manual mode). The power ramps fail ALL THE F***ING TIME, so unless you are going to be driving by yourself, avoid the power ramps if possible.
Third, hand controls vary by price and function. You can buy cheapish (like a few hundred $US) "sticks" that clamp on to the pedals and sit in your lap to a fully "drive by wire" system that lets you steer, brake, change gears, work lights, turn on the heat, etc. Here in the US, those price out around $70,000 last time I checked.
Forth, if you have extra money, look into getting an EZ-LOCK or similar. You get a bolt attached to your chair and a bracket is installed in the car. To "lock in" you simple drive your chair into the bracket and away you go! This way, your companion won't be bending and crawling around to do your tie-down straps.
Lastly, it would be nice to to get a "rear load" ramp. Then you will never care about finding a handicap space ever again.
Canada or your provence may have assistance for a van purchase as do some state here in the US. It really is hit or miss.
Good luck!
Good points. David also suggested we go for a manual ramp.
DeleteRichard, see if your friend can put ALS in the title. It will be better for fundraising. Shouldn’t matter but might influence people’s sumpsthies and give them more information
ReplyDelete