This weekend, Rob, Scarlett and I went car shopping. Well, to be more specific, we went wheelchair van shopping. Little less sexy, right? There are a few places in the Bay Area that specialize in vans, and we went to one in Burlingame called Mobility Works. On the weekends, they are only open by appointment, which meant we had the whole place to ourselves with a knowledgeable sales guy named Mike.
Mike showed us new and used vans from Toyota, Honda, and Dodge. It works like this: you add a 25K conversion fee to the MSRP of one of these vans. Any add-ons (leather seats, sunroof, navigation, anxiety medication) cost extra. It gets expensive. Used vans can be a good option, provided you can find one that has all of your requirements. For us, the top three are:
1. A navigator seat that can be removed, so I can wheel straight in and hook my chair up in the front. This will allow me to still feel like the mom in the family, and that is hugely important to me. I don’t want to ride in the middle of the van.
2. A ramp on the side of the van, rather than the back. We live in a crowded city and parking issues mean it’s a lot easier to unload a person from the side than from the trunk.
3. A fold-out ramp. Floor ramps (which, as the name suggests, come out from under the floor) are better looking, because they disappear when not in use. But they don’t go up as high as fold-out ramps, meaning they wouldn’t clear a curb. Again, city parking means we need a ramp that will be able to roll out over a curb.
Once a chair wheels up to the front seat of the van, there are a couple of options for how to lock in for the ride. One is called Easy Lock, and that sounded good to me at first, because it’s all automatic. But then we learned that I’d have to get an extra piece attached to the bottom of my wheelchair, which could inhibit clearance as I try to make my way around the city with its raised sidewalks and general hilliness. So we’ll opt for the hooks that have to be manually attached to the chair.
There are at least two different companies that do these conversions. Though in theory, you could buy a normal van and then pay for the conversion, Mike explained that, for a new van, it would be easier for us to work with a company that handles it all themselves. The conversion companies are in the midwest, and by the time you factor in wait time and shipping time/costs, you’ve spent about the same amount of money and probably waited two months for a van you wanted yesterday.
May I be blunt? This sucks. The appointment was much better than I thought it would be, because of the privacy we had and because I’m resigned to the fact that we need a van. But after we left, I fell into a deep funk. I hate how ALS is affecting our lives, forcing us to spend time and money on things we never expected to need. I hate that my husband, who loves cars, has to sell his and drive a van around the city. I hate flavorless Cobb salads, which is what I ate for lunch after the appointment.
I had what is known as Bad Attitude.
This is all very familiar. It’s how I felt when it was time to get ankle braces, when it was time to get a walker, and when it was time to get a wheelchair. And then once I had all those things, I was thrilled with how much they improved my mobility and my life. This will be no different. The adjustment period is hard. And because this particular purchase is so much pricier than the others, the added guilt is harder still.
It usually takes a few days to get over Bad Attitude, and I’m not there yet. Any new step on this bizarre journey comes as a shock. I look around and think, I cannot believe this is really happening. I am getting a wheelchair van. Friends of mine are getting feeding tubes and tracheotomies. For real. ALS is fucked up, and that’s pretty much all I have to say today.
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Sarah,
I am Lisa, Amy Farrow’s sister, and just started reading your blog and saw today’s post. You will get over the Bad Attitude when you are meant to. Sometimes you just have to sit with it and let it run its course. I suffer from depression which is in no way a comparison to ALS, but I can relate to Bad Attitude as Darkness.
ALS sucks, I am with you on that, but you do not. You radiate.
Thoughts and love,
Lisa
Lisa, thank you! I love Amy. Hugs and good thoughts to you.
Hi Sarah,
You write so well, and say all the things I’m thinking. ALS is fucked up. I miss my old life…biking, hiking, running, being active every day.
I just got a walker and have a real love/hate relationship with it. I hate the sight of it and the loss of another skill, but it is better for getting around safely and moving large piles of laundry about. Maybe it’s more of a like/hate relationship.
Oh well, I still get up and give thanks for another sunrise and look forward to some time in the pool. And especially precious times with my family and friends.
Keep writing…it helps us all.
Kay
The walker and the laundry! I could write a whole post about that, it really did help. Thanks Kay, sending good thoughts to you.
Sarah,
I understand that Bad Attitude. My hubby has ALS and he had the B.A before we got the the stair lift. He would get angry when I suggested that the lift would make life easier as he dragged himself upstairs to our bedroom, often falling at the top if the stairs until he became more afraid of falling than anything. Same B.A. with the ramp into our home, the renovated bathroom where he can fit his wheelchair, using a walker, using a wheelchair.
Change is hard. Of course if you suddenly win a million dollars, somehow that change doesn’t seem to be so hard for us! But I think he feels like somehow ALS is winning with each change we need to put in place. Maybe it is. But my attitude is that life itself can be hard, no matter what challenges you face, and anything, anything you can do to make life easier and better is worth it.
No one has any guarantees of anything beyond this very minute. Normally we never think like that. We all make plans for the far off future. Then ALS shows up and suddenly , those plans are shattered and we are left to pick up the pieces and somehow make a life out of the bits we have. But the gift that ALS has given me is that I, who used to always be doing one thing but thinking about the next thing, now live in the moment. I understand in my heart that tomorrow is not a given and I cherish what I can in each moment. I know my hubby is not with me all the time in this thinking. I understand that he is entitled to his Bad Attitude until he gets comfortable and accepts the new change to his life. But I also know that I want him to be able to cherish all he can in each moment of each day. And having an accessible van that makes it easier for you to get out and be in the flow of people and life is well worth the money spent. To go to restaurants to have great food (occasional flavorless ones are a given I’m afraid) & good conversation, to see the newest movie out there or to just go for a drive to see the fall leaves or holiday lights- these are moments to cherish. If the situation were reversed and your hubby had ALS, you would want this for him. Hey, we all have our moments of Bad Attitude. I hope you have people who love you who help you through those moments. Just reading your blog helped me understand my hubby’s moments a little better. And I thank you for that and tell you that I am one of many who are out here listening to you and rooting for many more good moments for you than bad.
Kathy
Thank you so much, Kathy. Thinking of you and your husband.
ALS is so fucked up. Sending so much love to you.
xoxo
Sarah – I read every blog you write and remain consistently in awe of the honesty you share with all of us. Your blogs show us all sides of you, especially to those who are just getting to know you. Please accept my positive thoughts and prayers during this tough time and with all the positive energy coming your way, you will enjoy what the van has to offer you. For now, let yourself feel the way you feel and the time you need to get over this very tough bump in the road. There is my two supportive cents worth! Take good care and please keep sharing with us.
I hate that I like your blog. I wish you didn’t have one because ALS is, as you perfectly define it, fucked up.
Much love and admiration for you. If I had your challenges to face, I’d be dwelling in Bad Attitude land for months at a time.
Sarah, you never fail to inspire. Your blog is such a gift to the world, beginning with you and your honesty and humor and then right through every comment from other readers. Thank you.
I am with you and the van is a hard step to take.
Have one for me when your ready 
We bought our van from a family who offered us a very fair discounted price. I had my mom and stepdad take it out to test drive and show me photos. We bought it sight unseen because I just couldn’t look at it. And I looked at it for 9 days in the driveway before Tim & I made a “appointment” to look inside so we could be all alone with it. Like a visitation.
But when I got to have my girlfriends drive me out for a margarita and I could just drive in and out of van, no awkward painful transfers…then it became indispensable
I love this. Thanks, my friend.
Thank you, Jane. xoxo
xoxo
Merci, mon amie. Tu as raison.
Thanks Pam! Hugs.
Tina and I cried all the way home from the Oakland Mobility Works. Bought a used van new conversion. Didn’t haggle over price or shop around. Just wanted the process over with. Alex
I so admire your strength in being willing to accept change. ALS does suck and it is always a challenge. I hope your van turns out to be great and that you get to have some great adventures with your family.