The Shoe Is On The Other Foot

I spent almost 40 years trying to support people with intellectual, developmental and physical disabilities. Yes, I say tried because the issues are so big and in many cases difficult when it comes to supporting people with disabilities. Systems, bureaucrats, politicians don't make it any easier.

I began my career in the disability field as a direct support worker and ended it as a nonprofit administrator. During that time, large institutions closed and people began to be accommodated in the things we all do, things like shopping, working, and playing. In simpler terms, just being able to live their lives like the rest of us.

While working in this field there was an inordinate amount of time spent talking about what we should call the people with disabilities who we were supporting - clients, participants, consumers and more. Eventually, I figured out after all the talk, that just calling people, people, or by their own name actually made the most sense. That's what you and I would want, isn't it?

Which brings me to the main point of why I'm writing this. I'm now a person with a disability, a progressive and incurable lung disease that every day prevents me from doing the most basic things and will eventually lead to my passing. Each day, something becomes a bit more difficult. Yes the shoe is on the other foot. Now I struggle to get from the front of my house to the back or to a doctor's office or a lab for an appointment or a blood test. All of these are difficult tasks due to my increased shortness of breath. 

I've also learned about how frustrating conversations with service coordinators or chronic care coordinators can be. These conversations are all part of an aspect of my health care and my health insurance. New and different people call to offer me help and assistance but most are unfamiliar with my disease (Pulmonary Fibrosis). I have to spend time educating them and in the end we usually agree there's not much they can do to help. Then they call again the following month and we discuss the same issues again.

It is becoming more and more difficult to get out and about. When I do venture out, I show up with my noisy and funny looking oxygen machine. I have to make sure I have back up electricity or batteries and even a small travel tank of oxygen. Of course its not just the oxygen. There's the tubing, 50' of it in my house, a tangle of trip hazards and 7' sections for travel. All of this has happened with the backdrop of a pandemic which has certainly added to the challenges. Questions arose quickly about vaccines. Initially challenges about where and when they could be gotten and then more questions about side effects relative to special conditions or diseases.

Of course with any rare disease that's life threatening, the issue of medications and prescription drug costs comes up. I currently take a medication that has the potential of stopping the progression of my fibrosis. But here's the challenge. It costs $10,000 per month or $120,000 per year and it comes with some pretty awful side effects. With my insurance I can get that cost down to $8,500 per year. Luckily, with the help of my doctor and a specialty pharmacy affiliated with a university, I was also able to find a foundation that has assisted in covering much of this cost. But there are many situations and medications that people battle over and few people realize how lives depend on those battles.

One of the things that was always frustrating to me when I was working with people with disabilities were  fights you had to wage for pretty basic medical equipment, including mobility equipment. Now I'm faced with the same challenges, being denied a non-invasive ventilator due to, not just expense, but because the insurance provider doesn't understand the equipment or its purpose. Appeals, appeals and more appeals lead to nowhere. The only real answer is finding a provider who will pay for and support the use of the equipment. Of course in our current system of health care, you can't just switch insurance any time you want, you need to wait for the new enrollment period.

I have wonderful care and support provided by my partner and spouse. The hardest part for me is realizing  the things I can't do anymore. Some are pretty basic things, others are more complex. I can't get down to the lake I love but I can see it from up above. Going out to other places or even just for a drive becomes more difficult as time goes on.

I have to fight dwelling on regrets and try to live in the present. In some cases that's easier said than done. I'm experiencing some cognitive and gross motor losses which make writing my memoir and this blog more challenging and I've found that I've had to cut back on those things. That of course is a disappointment but I'm going to keep trying. When someone asks how I'm doing I struggle to find the real answer. 

This is certainly not a call for sympathy or anything else. We all have to deal with challenges, some very real, others perhaps imagined. At this point I'm simply recording a journey that changes day by day. It's my own recognition that the shoe certainly is on the other foot at this point in my life.  I continue to learn through experience and understand more clearly much of the frustration I saw from disability rights groups over the years. Yup, we're 'Not Dead Yet' and we want to be treated fairly and with dignity. Something we all want.