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Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.Accessibility Is Everything!
Last year around this time, I used a mobility scooter for the first time at a conference. I hadn’t even considered it before, even though I was getting more and more exhausted every time I would travel, trying to get from my hotel to the conference venue. I was trying to just stay in the closest hotel I could, taxiing or Ubering much as possible, and hoping that I would somehow make it through the week.
Having a disability can be exhausting, and a mysterious disease that evades diagnosis can be even more exhausting. A little over 10 years ago, I noticed that I was getting out of breath when walking longer distances. I saw a lung doctor who told me my lungs looked great. I got treated for asthma even though I didn’t really feel like my symptoms matched, and the asthma medications never seemed to help. At some point I saw that lung doctor again and after all the tests he still said “looking good!” He very gently suggested that maybe my declining stamina and breathing issues were due to the increase in my waistband, although he didn’t say much more than that.
Thankfully, my primary care provider has always seen my slowing increasing weight gain as a symptom and not the cause. Some of the specialists I have been to over the years have been less than ideal, and sometimes I wonder how I have persevered in spite of things that medical professionals have said to me. But anyone who knows me knows that I am not known for giving up.
Looking back, I realize that although I never have thought of myself as good at sports, I was not as inactive as I thought I was. I enjoyed playing golf with an exchange student, I love(d) to go swimming. I used my gym membership to ride the bike and lift weights. I finished an indoor triathlon. And all the while, I have always loved the travel component of my work. Anyone who has run the gauntlet from home to airport to hotel and back knows that it counts as a workout.
But more and more, I was noticing times when my stamina would just completely give out. I would need to stop to rest. I would be completely out of breath and my friends would be wondering if I was okay.
In 2019, I was diagnosed with diabetes, and I thought THIS IS IT! This is the answer to my growing fatigue; this is why I am so sluggish. I had gestational diabetes before, and I know that on some level, diabetes is a numbers game. Of course it is much more than that, but I was hopeful that once the numbers were under control, I would feel like my old self again.
Nope.
And not just nope because there was a pandemic and maybe I experienced some deconditioning like most every one did. I saw my amazing physical therapist and we worked on that. And instead of feeling better, I felt worse. I started noticing that if I pushed myself to be active, I would end up feeling so exhausted that I would sometimes need to spend a day or two in bed to recover.
One of my first post-pandemic trips was to Arizona, a state I have traveled to frequently. And when I arrived at the Phoenix airport, I discovered, much to my dismay, that the terminal had been renovated and expanded. My familiar route to baggage claim no longer existed. And what was once a short walk was now much, much longer. After struggling to get even partway to baggage claim, I stopped at a gate and asked for wheelchair assistance.
Wheelchair assistance at the airport has been a game changer for me. And for awhile, I thought that was all I needed. But I was still struggling upon my arrival to do anything involving leaving my hotel. I remember one trip where there was a grocery store across the street, and I would see it out the window and want so desperately to go there but just getting across the street seemed like too much.
So last year, I was set to go to a conference. I had my plan to use wheelchair assistance at the airport and then be staying right across the street. I figured it would be a struggle but exhaustion was just part of my life, it seemed.
And then the conference people contacted me to let me know that the venue was doing some renovation and the expected elevators and escalators (the ones closest to the meeting rooms) would not be working while we were there. Could they do something else, they asked, to help me get around?
And that is when I somehow asked for a mobility scooter. Of course, they said yes. I got to the hotel, and the hotel brought the scooter to my room. And I was nervous. How would I feel riding a scooter? What would people think?
I don’t remember what I wore that day, but I know I dressed up for my scooter debut. I’m pretty sure I asked a trusted colleague to come help me with my hotel room door (although it is even more fun to experience the feeling of accomplishment when getting through the door myself). And all those nerves just melted away because now I could go to the conference and enjoy it without a fog of fatigue.
More recently, I was riding a scooter at a conference and a colleague stopped to ask “what happened to you?” I simply replied “life.” My colleague thought for a moment and (knowing that my work involves disability advocacy) said, “Well, now you can say that you are a person with a disability.” My instant reply was “how do you know that hasn’t been true all along?”
And as it turns out, I am right about that. A trip to a specialist this summer revealed some important answers for me, and the challenges I have been facing are genetic and have been with me all along. And now that I have some answers, I can better address these challenges. I am battling the fatigue and other things, little by little, and maybe I will see an improvement. Or maybe I won’t. But I have better tools to support me now. An electric wheelchair is on its way to me, and I can’t wait.
So this year, same conference, new venue. And another mobility scooter and a lot more confidence. And when my last session was done, I went on my scooter for a walk with a friend and colleague. And I got to see sunshine and trees, and hear acorns crack below my wheels. And I got to see and hear birds. We crossed over a big bridge, and when we did, it really hit me just how long I have been a spectator in life, holding back on doing so many things because I didn’t have the access tools I needed.
I have spent a lot of time hanging back, not doing the thing because the fatigue and lack of stamina I experience are barriers. Universal design features, like good signage and ample seating, are a huge help, but I still need the accommodation of a mobility scooter or motorized wheelchair. These tools help me use the energy I DO have to do the things I love, rather than focusing all of my energy on just getting from point A to point B.
This year’s conference was busy for me, with presentations every day. Early mornings and late nights. And on the last day, a celebratory long walk with a friend. And I got back to my room and called my dad, who said I sounded so good!
World, I AM BACK!! And when I say that accessibility is everything, you’d better believe it! Because I am living proof that giving people the tools they need to do the thing makes all the difference.