The Blind Date (2025)

18/10/2024

Toronto ON (3/3) “I really want people to know there’s a balance. You don’t need to be superwoman all the time and obviously I don’t want anyone to be negative all the time. But being positive but also realistic and acknowledging how you’re feeling is so important. For example, when my Botox kicks in and I feel amazing, I’m positive, like, yes, let’s do this. But once the Botox wears off, I’m not going to pretend that it’s amazing walking. No, I might need to use my wheelchair more that day and it’s okay to have a bad day. It’s okay. I really want disabled people and people with chronic illnesses, anyone just if you’re having a bad day, it’s okay. Feel that. Feel it.“ Jules

18/10/2024

Toronto ON (2/3) “I think in my twenties a lot of it had to do with my self-esteem issues. Going to university really helped my self-esteem. I feel a lot smarter being in university, learning about social work. I also, it’s kind of silly, but two years ago I got bangs. Having bangs really increased my self-esteem as well.

Dating has been challenging. A lot of people, in my case men, are very ignorant. For example, I do use a wheelchair and a cane. They can’t seem to wrap their heads around someone using a wheelchair while walking. So I’ve been met with a lot of ignorance. When it comes to my speech, I speak slowly and I’ve been asked many times if I have an accent. However, I was born in Canada, so I just say I’m disabled.” Jules

17/10/2024

Toronto ON (1/3) “I have generalized dystonia. Essentially dystonia is a neurological movement disorder and the dystonia impacts my neck, my right hand and the way I walk. I do walk with a limp. However, 11 years ago I underwent a wake deep brain stimulation surgery and with that surgery I had two electrodes implanted into my brain and it’s connected to a stimulator that is located under my collarbone on the right side. And what that’s doing is stimulating my brain to not misfire.

I do not have as many involuntary movements. For example, before my surgery, I could not hold my head up on my own but now I can.

I do still walk with a limp and with my walking I do get Botox treatments, which is amazing. Dystonia is essentially the muscles being overactive. The Botox temporarily paralyzes the muscle, which really really helps my walking. I get the Botox injections in my calves and my right arm and it’s supposed to last for three months.

The first couple of weeks of getting the Botox, the Botox is kicking in and it’s like a roller coaster where the walking gets better and then by maybe like towards the last month, the Botox is getting out of my system so the walking gets a little more challenging before my next Botox injection. However, we cannot inject Botox before the three months because then you’re risking permanent paralyzation.

I appreciate when the Botox is at its peak and I utilize that by going to the gym and just being very mindful and grateful that I’m able to walk better. But then I also utilize a cane and a wheelchair so my mobility devices also really help me be independent and allow me to do things.” Jules

04/07/2024

San Jose CA (3/3) “I think it’s a very difficult but good lesson that we, as people with chronic illness, can’t hold on to these diagnoses too hard. Because our health is dynamic, and things change, research changes, and there’s always more information coming. So it’s okay to know I’m sick, and I can hold on to the fact that I’m sick. But basing my identity on a diagnosis is not the right move.

What I truly need is comprehension. Comprehension is the first step, and then the empathy and the support is the second step. If there’s no comprehension, then just throw it all away.

I have this huge discrepancy between my desire to do things and my capability. I thought that I had come up with an okay vision of what my life could be now. But I have to keep resetting that bar lower because of what I’m capable of doing, and that is heartbreaking. And that’s just because of what my body is capable of doing, what my brain is capable of doing.

If I could go back, I wouldn’t go back the same way because I would never want to give up what I have learned and gained. The way I connect with people, the way I share, that is such a gem. That is such a gift. If I suddenly had my health, I would want to use what I have learned and find ways to incorporate that into a career that really supports those who need support.” Cathy

04/07/2024

San Jose CA (2/3) “You’re suddenly on a mission. And when you’re sick, going on a mission isn’t easy. So everything became so much harder. And it’s a transition from being a normie to suddenly being someone who’s chronically ill. I wasn’t ready for it. No one is ever ready for it.   I didn’t have any community at the time. I was always active on social media, but everyone I knew on social media was my existing friend group or celebrities. So I created an anonymous account where I looked for people who had chronic illness or where I could share information about myself being sick. And that was the first step in creating community for myself during that time. And it eventually became my main account because the illness took over my life and became my identity, as much as you don’t want it to.    I had to embrace it. And I had to embrace the loss of my career. I had to embrace the change in my mobility and my lifestyle. And it was easiest to do that in the new forum that I created, in the new community I created.

I spent about a year undiagnosed, and I went to a rheumatologist at one point who said to me, ‘I don’t know why you’re here,’ which was the first person to really gaslight me and be rude to me. So I thought rheumatology was cleared and I didn’t need to go back. But I went to an allergist who said, ‘I think we should give rheumatology a second chance.’ And he got me into a rheumatologist that he really liked. And when I got there, she diagnosed me with fibromyalgia, which she ended up taking away once she did the in person exam because this was during COVID. Then she diagnosed me with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. And she referred me to Stanford’s Myalgic Encephalomyelitis/ Chronic Fatigue Initiative.

And, on a completely different path, I also have a diagnosis of multiple sclerosis. And those are not comorbidities. It’s really unusual. I’ve had migraines all this time, so it’s very normal to be seeing a neurologist for your migraines. And my migraines were very bad, so my neurologist was like, ‘you know what? Let’s get you an MRI.’ And when they did that, they saw lesions in my brain.” Cathy

04/07/2024

San Jose CA (1/3) “I look healthier than I am. And I think this is true for a lot of people with chronic illness. That we seem like we’re a lot healthier than we are. But I fade very quickly.

I am not someone with a congenital illness. I lived my life pretty normally up until my mid-thirties. I didn’t feel well in my twenties, and I got diagnosed with Crohn’s. But I kind of think of that as a blip because I have had my Crohn’s in remission for most of my life.
  So I got into my thirties as a pretty healthy adult, with a really thriving career. And then I, I’m not sure what age it was, maybe like thirty five. I just suddenly became very ill, and everything kind of got flipped upside down for me.

I tried to continue working and just living my life, and it just suddenly became too much. I had to go out on a medical leave. And that was the tipping point where everything changed for me.” Cathy

08/06/2024

Dallas TX (2/3) “I just want people to understand that being blind doesn’t mean helpless, that we are capable and willing to be a part of the society and to continue doing great things to change history. And to make history.” Kylie

08/06/2024

Dallas TX (1/3) “I was born with Lebers Congenital Amaurosis. So, basically, my retinas and cones and rods don’t work right. So I’ve been blind since birth, and I don’t know anything different. So my life has been pretty predictable. I wanna say stable as far as like, I didn’t have to go through any changes with my vision like some people do. I didn’t have to learn how to be blind. I know that sounds funny.

I grew up learning how to read Braille, and it was tough at first because I wanted to be like the other kids and read print. But once I realized, okay, reading Braille is pretty cool. I did it, and I’ve learned throughout my years to embrace the disability instead of hiding it. I used to want to hide my cane. And even through middle school, because people were mean, I would hide it. I just didn’t want to be blind. Until I got to high school and up into college, when I was like, okay. I have a good, strong group of friends who aren’t gonna judge me for this. That’s when I realized it’s okay to be blind. It’s okay to be me.

And then I realized, oh my gosh. It’s almost time for me to apply to get a guide dog. And that’s what really opened my eyes. I needed to embrace who I am so that I can get this dog. And through getting Dasher, he helped me embrace that.

I learned to ask for help. I learned to branch out and be who I am. And Dasher gave me that freedom. That is so cool. It is so beautiful, and I I cannot thank that dog enough.

I didn’t really have a sense of community until I got Dasher at The Seeing Eye and then it’s like, wow. Where have all these people been all my life? It’s been so sweet to meet other people who’ve had similar experiences, who have the same disorder I do. That’s really cool when you meet someone who has the same disorder and you can relate. There’s even somebody who has the same exact gene mutation as me.” Kylie

03/06/2024

Bridgman MI (3/3) “Duffy is short and stocky. I call him a tank. But he’s so gentle. He’s the first dog I’ve had that I’ve truly felt comfortable on steps. They are my nemesis. Because I can’t see how many are there or how far down I need to go. He takes his time. He takes his time, and he’ll even stop sometimes mid-flight and check back to see if I’m still there.

He’s a real cautious dog. He doesn’t like little pebbles on the sidewalk, so that creates some issues sometimes. He also doesn’t like mud puddles. He’s very dramatic. He’ll go three, four feet away from them. I get up at people’s porches to get away from a puddle.

Have you ever heard of slipper feet? He has them. When we walk inside, it sounds like he’s this old man shuffling with slippers on. I think he should have a pipe with a smoking jacket. He looks very distinguished when he’s looking at you. Like, his eyes aren’t quite all the way open. It’s like ‘you can be this much of my sight at this point.’  
I went to a technical center where you learn how to deal with being blind after you lose your eyesight. I had classes. We lived in a dorm, and I learned how to do everything blind.   You had class time, you had breakfast, lunch time, you had dinner time. You had many classes in a day that you had to take. There were some that you could test out of if you didn’t feel you needed them. Which I did do. I had to make two meals, a breakfast and a dinner and from scratch, and I did both of those and tested out that day. 
We went skydiving as a class. I’m a bit of a daredevil. And I thought, well, what the hell? I can’t see how far the ground is anyway. It was exhilarating. I wanted to go right back up. I wanted to go right back up again. And I and in fact, when we were checking out, I bought two gift certificates. 
When you’re free falling, it’s so loud. And the wind, I mean, your skin and just your hair and everything, it’s just pushed back so hard. But then once he pulled the chute, it’s the most peaceful, quiet. It’s so fun. I would recommend anybody doing it. I just, I loved it so much.” Laura

03/06/2024

Bridgman MI (2/3) “I had a lot to deal with when I lost my sight because I lost my sight in July of 2007, and got diagnosed with cancer in August of 2007. So there was a lot of upheaval at that time. And I’m still fighting the cancer thing. I’ll always have to fight that unless they come up with some cure. So I think I have a double thing going on here, and they don’t list cancer as a disability. However, it does disable a lot of what I want to do at times. It depends if I’m in treatment or not. Because that’s just an ongoing thing. I get tired real easy. So if I know something big is coming up, I try to really take care of myself. I’m talking energy wise. I really try to take care of myself to reserve some energy for whatever that may be.

My life since losing my eyesight is a lot smaller. I think that’s the biggest change because I was working before. I had a group of friends. I had my partner at that time, and now I don’t have any of that. My life is small. I think that’s the biggest thing. I’ve adapted fairly well with losing my sight. I I’m the type of person that’s like, okay, this happened. What do I need to do to get along the best I can? And I’ve been that way all my life. I’m sure that came from the way I grew up. It constantly served me well. Although that wasn’t fun the way I grew up, it served me very well for when I did lose my eyesight.” Laura

03/06/2024

Bridgman MI (1/3) “I had West Nile virus, Epstein Barr meningitis, and encephalitis all at once. They believe those viruses attacked my optic nerves and just fried them, basically, along with the myelin. Myelin is an insulation that’s on your nerve endings. So I have a hard time regulating cold and hot. I can overheat real easy and pass out. And I get really, really cool super easy. I don’t have that balance in my body.
 I was in rough shape. I had to prepare my funeral. I had two kids. One had just graduated high school. And the other had just been out two years. He was leaving for basic training to go in the army. And he said ‘mom, I won’t go. I won’t go.’ I’m like ‘no. You go. If this is the end of mine, that’s okay, but you still need to live your life. Go live your life.’ 
That part was hard. And not being with my kids was hard. That probably was the hardest thing. And, you know, at that time, I had a partner, and we were together for almost twenty years, just shy of twenty years when she just finally said ‘this isn’t the life I want.’ Okay. Well, this isn’t the life I wanted.   I have to prove that I’m still blind every six months for my food benefit and every year for my disability. It’s nonstop. I don’t get a break from that. It’s very draining to me. And in all honesty, when I get those letters in the mail from the Department of Health and Human Services, I literally tense up. It’s like, oh, gosh. What do they want now? What are they telling me not to do now? You know, it’s constant. 
In this country, people criticize people who are on a food benefit, which I am. You are looked down upon. Even though I paid into that system all my working life up until I was 43 years old. I started working when I was 13. I started putting in at 13. So for 30 years, I put into this system.    You’re still a less-than citizen. And I will get comments. I remember a couple of Easters ago, my grandkids were coming. I got candy for them for their Easter baskets, and someone behind me made a snide remark saying, ‘oh, I’m glad taxpayers can pay for you to buy candy.’” Laura

15/05/2024

Monrovia, Liberia (2/2) “Embrace yourself. It’s not something that’s always easy I would say but I encourage you to embrace yourself. If you embrace yourself, you will always love yourself. There’s nothing that people can do that will make you break down. There’s nothing to be ashamed of. Yes it is true: I cannot do everything the same as people with two arms but I can still appreciate myself.

I recommend going to school because if you are educated you can break barriers. You can go places. People can look up to you.” Princess

The Blind Date

18/10/2024

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17/10/2024

04/07/2024

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08/06/2024

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15/05/2024

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