The Wild West of Online Dating in a wheelchair … So far …
Online dating. Those two words. I would wager a bet they are evoking quite a few emotions for many of you – either positive or negative. As a newly divorced quadriplegic I’m back in the dating game. I never thought I would be here actually. You never get married to think you are going to be divorced. Life happens, people change, directions shift, and we all have our own story.
Be that as may, the way of the world today is online dating. Unless you’re going to a late-night bar for a one-night stand, it’s really challenging to meet people organically. Don’t get me wrong, of course there are ways, but we have these incredibly busy lives in the face of our digital lives.
I started to dip my toe months ago in to match.com and Zoosk. Being the scientist in my own life, I started to research different dating sites and what they have to offer. The choices are overwhelming and they all have a similar vibe. Dating is no different than finding a job. It’s a numbers game. It’s about statistics. That is not very sexy or romantic, but I will say you do get to know a few authentic people pretty well before you go meet them for a first date.
In the name of research and a book I will be writing on Disability, Dating, and Divorce in the future, I decided to jump right in — in a very “Ali” fashion. When I was in my 20s, I would go to a bar and bring home a guy, which sometimes resulted in a one-night stand or even dating them. I didn’t know much about them and would take months and months before I realized I was going in the wrong direction. I do believe online dating, and there are many creepy people out there, but it at least narrows down some of your options so you can read a little bit about a person’s beliefs, wants, needs, etc. However, there are many fake profiles and trolls out there as well.
read more…How sleep deprivation contributes to my purpose
WHAT’S WORSE THAN BEING PARALYZED? Sleep Deprivation – Millions Sharing a collective pain together
I’ve commented before that paralysis itself is not innately the biggest challenge with living a life in a wheelchair. It’s the secondary complications associated with it. This is true for many complex diagnoses.
For example, being paralyzed is quite easy, all I have to do is sit there. The biggest challenges include things such as urinary tract infections, sensitive skin leading to pressure sores, respiratory infections, etc. These sneaky complications can knock you out for the count if you are not careful.
For me, the mind numbing, consistent, unrelenting, and burning pins & needles on 80% my body 24/7 occupy many of my daily thoughts. Chronic pain is no joke and it’s tricky. You know it’s there, we cannot measure it or see it, doctors throw meds at us, and it appears never-ending. From a medical standpoint, you cannot see chronic pain on any kind of medical imaging.
Adapting to your Circumstances
Things have been challenging in my care life at the moment. I am going to leave it at that and just say that everyone is doing the best they can despite unforeseen circumstances. With that said, I have some of my beautiful caregivers coming in the morning to help.
They also have other jobs and lives. So, for the last few weeks and few weeks to come I’ve been working with my 77-year-old mom to adapt my life from a caregiving perspective.
Let me say this. She may be 77, but she might as well be a 60-year-old monkey who loves to climb on counters and is faster than the speed of light. She is just one-of-a-kind. She’s an incredible crazy German lady who shows unwavering love all the time. She has saved my life more times than I can count.
read more…DISABILITY REPRESENTATION – What is Beauty?
Yesterday I had an hour to kill and I decided to do a fun filled beauty Photo-shoot for myself. I think my mother was an excellent photographer. The behind the scenes of setting my body up, well that was rather comical and gave me a great giggle for the day, but it propelled me to think about something more intellectually and emotionally substantial.
HEARTBREAK – The PECULIAR Path of GRIEF
Despite my quirky exterior and rosy attitude as many seem to comment on, I, too, really struggle at times. Honestly, who doesn’t? It’s human nature.
Many of you know my life’s purpose and mission is to help other humans in a range of different capacities, but with so many tremendous personal things going on in my own life at present — I was overcome for a few hours with this incredible feeling of heartbreak.
Heartbreak for what you might ask?
PERMOBIL HERO of the YEAR AWARD & KEYNOTE SPEAKER
I’m humbled & speechless beyond words!
I was invited by Permobil and that Permobil Foundation to Nashville, Tennessee this year to be there Key Note Speaker for their incredible Casino Night fundraiser to raise funds for wheelchair users to help them purchase components of complex rehab customized wheelchairs, full wheelchairs, smart drives, supporting disability organizations, and so much more.
For those unfamiliar, Permobil is a global corporation that manufactures customized manual and power wheelchairs (among other products such as Roho cushions and smart drives) for those of us with significant mobility impairments. In my humble opinion, they are the crème de la crème of wheelchairs and you can customize them to fit your body like a glove.
Of course, I might be biased because I have been in a Permobil wheelchair for the last 13 years since breaking my neck in 2010, but they really are beautifully designed chairs with all of their staff out to truly help wheelchairs not only survive in life, but to thrive.
read more…FROM START TO FINISH – WHEELCHAIR AIRLINE TRAVEL ACROSS THE COUNTRY!
Over the last week I traveled to Anaheim, California from Raleigh, North Carolina for a medical technology conference I was speaking at. I’ve traveled on planes before, but I’ve always had an entourage of people to help me as a quadriplegic paralyzed from the chest down with no hand function.
I know so many of my friends who either travel alone or only travel with one companion. I wanted to pull my big girl pants up and try this myself with one person because, well, this is life. I cannot always have an entourage with me and I feel blessed that I have been able to thus far.
I took a journey across the country with one of my amazing humans in my life who helped me and it was an adventure to say the least. There was good, bad, and the ugly – although, all with laughs along the way even in absurd circumstances.
I learned some key valuable lessons, iterated a design on breaking down my wheelchair for the plane, and try new techniques with teaching the staff in the airport how to lift me properly without the help of my caregiver all the time.
I also learned a key lesson about Boeing 737’s, a very standard plain for domestic flight travel in the US, with respect to the cargo hold. I know the cargo hold schematics with respect to height is about 35 inches, which my chair does breakdown too.
What I did not know is that the door opens inward, which makes it a lower threshold for power chairs. This provided a great deal of stress as I had to walk many individuals through how to gently tilt the chair without tipping it over to get it inside.
It worked quite well on the way to California, but not so much on the way back when our plane was broken, they had to re-load and unload me + my wheelchair multiple times. Thankfully, the wheelchair damage was cosmetic, but still need to figure out a better solution for the future.
In any event, I created a YouTube video from start to finish to hopefully give confidence or provide some useful strategies for fellow wheelchair users.
I know this experience may make some folks not want to travel by wheelchair, but while we are fighting for systemic change in the airline industry, we still need to learn how to adapt to unforeseen circumstances in order to enjoy our lives as well!
This is what we do best, I find, in the disability community – we become the most creative problem solvers in all aspects of our lives personally and professionally!
REALITIES OF QUADRIPLEGIC LIFE – WHAT’S THE ALTERNATIVE?
I preface this article by saying first and foremost:
- I am very Quirky.
- I find humor even when I’m chained up to a literal hospital bed in China after spinal surgery.
- I find hope where I didn’t know it existed.
- I love to help other human beings through incredibly tough times, offer a change in perspective, and find incredible joy in making people smile.
This is not to say that life as a quadriplegic paralyzed from the chest down with paralyzed hands and fully dependent on another human being for my physical survival does not take a toll on my mental psyche at times. People often comment on my incredible resilience and strength, and while it’s true, I am also human.
I would say I can probably handle more than most people, but I have breaking points as well.
2023 has been one of the best and worst years of my life to date. Professionally life is taken off in these incredible directions, especially with speaking, and I’ve made some amazing friends along the way.
Personally, things have been rockier than they have been in many years and I don’t really feel that it’s appropriate to comment on too much of the personal because it involves other people. There are always two sides to a story and I certainly would not want to share just one version here because everyone has their own opinions.
HOTEL ACCOMMODATIONS – One Size Does Not Fit All – Adapting to your Needs
Traveling is challenging enough as a quadriplegic with respect to bed heights, doorway entrances, accessible showers, the list goes on. I always travel with a caregiver. I actually have less needs than a lot of my friends because I pretty much stick my head in the sink to wash my hair and take a shower on a bed.
I don’t need access to so many things my friends do. However, there are a few key differences that are essential for safety and comfort when I’m traveling to hotels.
One of my “medical curses” you could say is my skin. You look at me I quite literally get a pressure sore. So, how soft the mattress is is critically important and I also need to sleep at a 20° angle for respiratory issues at night. With paralyzed abdominal muscles I breathe my diaphragm, so I don’t get as much oxygen into my lungs as an able-bodied person does.
There are certainly devices you can purchase to put under the mattress to inflate the head or pillow top foam overlays I could bring with me. However, if I brought all of the equipment that would make me incredibly comfortable in a hotel room, I would fill up a van (when I drive places) to the brim, and would likely be out of luck when traveling by plane.
So, what have I had to do? I have to adapt.
How do I do this?
Creatively.