I have tried to write this many times over, but I always ended up deleting and then procrastinating on re- writing it. I could not figure out what was so hard, why could I not just type this and post it to move forward in my journey…then it hit me the answer is simple, yet the action is so hard. I needed to ask for HELP. Asking for help seems simple right? In fact, I am one of the first people to throw out the offer to family and friends alike “if I can help you in any way please let me know” not realizing that for them it may be harder to reach out and ask for HELP. Yet here I am opposite the offer and asking for help.
I know what I am asking for is A LOT $74.375.00, but not asking for it I stand to lose a lot more, without a converted van the cost I end up paying is the loss of my independence and quality of life. I need a van that has been converted so that I can be transported to places in my powerchair. My powerchair is not an accessory or a choice, but more like an attached exoskeleton! I know it is very expensive the cost of the conversion alone is more than the van itself; the cost of conversion alone is $38,655.00. For you to fully understand I must let you into what I like to call my “organized chaos” because if I don’t let you in you can’t understand why this goal is so important to reach. So, in the next few paragraphs I will reveal the struggle I often conceal from others.
For those of you that don’t know me, I’m Lindsey a 38-year-old with a knack for self- created adventures and a desire to make my mark on the world or at least a lasting impression on all the people I cross paths with. Oh, and I guess this is where I should mention I have Cerebral palsy, Lupus and RA. Did you catch that though? It was an ever so slight play on words- “I have” those disabilities – meaning I own them they don’t own me I don’t let the disabilities control how I live my life! Although, these days it is getting a little tougher not to allow that. See with the developmental disability CP and the autoimmune disorders combined I can no longer transfer into a personal vehicle from my wheelchair without great difficulty and pain. Add into the mix my friends and parents are getting older and as a result they struggle to lift my manual chair and put it in the trunk, although every one of them would do regardless of that if I needed it.
So, let’s go to work, shall we? A normal workday for a non-disabled person might be around 9 hours with travel. Sprinkle public transportation to the mix, because I need my powerchair at work and the only way to do that at this point is paratransit. They pick you up and drop you off at your location, but they may have to pick-up other people along the way, and I must account for that. So, if I want to be to work at 7am I need to get up at 4:45am Because the bus window starts at 6 it is the earliest, I can have and it’s thirty minutes so that means they can come anytime between 6-6:30am and I just hang out and wait, because they will only wait 5 mins for me before they leave. Once on the bus I find there may be 3 pick-up’s and 2 drop off before I get to work, chances are I won’t make it before 7! That means I may have to use leave I don’t have (most of it goes to doctor’s appointments, infusions, and days I lost the battle fighting against the autoimmune disorders). The return home is already scheduled for 4:00pm I already added a 30 min cushion to when I get out at 3:30pm for when the bus is late and if they weren’t late it’s just more waiting time, which is added to the 4-4:30pm window that I am waiting already. Once on the bus again there might be two pick-ups and a drop off before I get home around 6:45pm if I am lucky. So that time can easily add up to a 14-hour workday. The day for me doesn’t stop there I still have dinner to cook and any other personal life duties. I am not bashing Metro as it is the only system, I have a choice of using to get to work, I am grateful and most of the drivers are professional at what they do. Metro Paratransit does take advantage of the fact they are the only option most people with disabilities have.
Going for a doctor’s appointment takes a whole day up, I had an appointment this week at 2:30pm. However, I must account for possible pickups/drop offs along the way and must make sure I’m there on time or risk no being able to be seen and must reschedule. My window was at 12:30-100pm. I got lucky it was a straight ride which meant I arrived around 1:30ish. Now I just had to wait until 2:30pm for my appointment and hope they were running on time because my return ride was scheduled for 3:30pm-4pm. A lot of time is spent sitting and waiting and reading if anything I have patience. What I don’t have is any leave at work left to be able to keep allowing for the extra time it takes to ride the Paratransit. Often, I delay doctors’ appointments and test because I must account for leave without pay. Let’s face it almost everyone as had to juggle stuff like that before I know I’m not the only one.
Most of my energy Monday-Friday is invested in working because I don’t have time or energy for anything like going to dinner with friends. Working is Important to me; it gives a sense of purpose and productivity! Plus, I still owe student loans so technically I don’t even own my brain yet, hahaha
Weekends is when I try to devote my energy to family and friends, and right now I have become an expert in explaining away my unavailability. Going out requires so much energy and I must think of it in terms of do I have a reserve of it? about half of what I have I need use on transferring in and out of the car, which means I may not even be able to fully enjoy what I set out to experience.
Recently, my sister came home with my nephew and his girlfriend for a weekend visit. It was Saturday night around 8p.m. and they were taking about how we could all use a haircut. So, it was decided on Sunday we would all go together for haircuts. If only life was that simple for me! It’s already 8 p.m. Metro is closed, and I must make reservations 24 hours ahead of time. So, then my sister was like fine we might have to pay more but we will all go to Ulta since it was in strolling distance from my house, I could walk there problem solved, all appointments made. Overnight it had snowed which meant that the curb cut outs and the sidewalks to the store were not plowed. I couldn’t go, so I saved face I made sure they went for theirs and I stayed home. I never want to be the reason people don’t do things. It’s not just hair appointments that I pass up on, it’s the last-minute cookouts at family houses in the summer, it’s the spur of the moment things like let’s go see a movie, or just the simple let’s get out of the house go for a cup of coffee.
I’ve tried for years to work towards this goal, and any time I get a small savings going something comes up- this year was new powerchair year for me and that’s a big event for people with disabilities. As I mentioned before without my powerchair I cannot function to my fullest it truly is my exoskeleton. I’ve never changed my goal to get a modified vehicle BUT I am changing the plan! I know this is not going to happen with just me I need HELP. I’m asking for support from my family, friends, and community to help me reach this next step for my continued independence.
I know everyone has different struggles they are facing especially with inflation so I understand if you cannot financially help me at this time. Any way you can help would be so greatly appreciated so please consider sharing my campaign on your Facebook so that it can continue to reach others in the community who may be able to help.
Please understand while the tone of this go fund me is “look at how difficult things are” that is not my stance in life! I am almost always upbeat, but to ask for help and with the amount I am asking for people needed to know this is more than just “I want a car” my independence and quality of life are hanging in the balance. I put this up without anyone looking at it. Why? Well, the answer is simple really, I can’t ask people to proofread my experiences in life, so poor grammar aside they are my experiences and mine alone.