Yes, that’s often how it feels. But I’m trying to use that for motivation and to provide purpose for myself. The motivation is to get this weight off so that I can have hip replacement surgery. But what about those people who do not currently have an option on the horizon for quality of life improvement? After all, I do have a chronic disease that will, over time, worsen without new medical discoveries of treatments. I have Ankylosing Spondylitis. It’s a disease in the Rheumatology category. There is not a current treatment to improve this condition just like there are no cures for Rheumatoid Arthritis, Psoriatic Arthritis, and many other autoimmune diseases. My daughter has fibromyalgia which doesn’t even have an affirmed diagnosis (although there is some hope on the horizon for that) and definitely doesn’t have universally effective treatment. Just chronic pain in multiple (and changing) joints throughout the body, total loss of energy which manifests as exhaustion, and in my daughter’s case, migraines. This sounds more simple than it truly is.
The purpose I feel I’m being led to is to raise awareness and champion the needs of others. But why take on such a difficult call? Because in the vows of my baptism later professed at my confirmation, I promised to “seek to serve Christ in all persons, loving (my) neighbor as (myself)” and I take that very seriously. This is of course from Mark 12:31 “The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” My daughter Rachel has provided perspective about is: the way we welcome others into our spaces (our homes, our churches, and even our hearts) is the visible and living proof of how we follow that commandment.
So, I’ve been given the blessing (yes, that’s exactly what I said – blessing) of seeing life from the perspective of someone other-abled. I’m not as challenged as many but it is helping me to understand to some degree. This plays itself out in my attempts to use a walker to keep the weight off my right hip. In the process of doing that I’ve now developed very painful tendonitis in my left foot. This means I literally trying to walk on my hands. Add to that the potential my doctor has warned about of developing Carpal Tunnel Syndrome and I might as well just stay seated all the time.
The struggle is real – Obstacles are real for other-abled people. In well-meaning efforts, we as a community of people try to provide for the limitations of others without asking them what they truly need – and we often miss the mark. I am also a witness that it is tremendously difficult to ask for help. More than you realize if you haven’t been in this position. When I finally ask instead of trying to “do it myself (read that like a petulant 3-year-old) I’m embarrassed and wary of receiving pity. Believe me when I tell you no one wants pity! It’s also much slower to have to depend on others as they usually need to drop what they are doing to help.
But, you say, there are all kinds of things in place to help other abled people. Really? Let’s look at just two of those:
- Handicapped parking – This parking is often near the front door of a place but if you look closely the ramp needed by someone dependent on wheels or crutches is far from where they park or takes such a long walk to access and then ascend the ramp that it’s more difficult to use. I need the shortest route into a building and believe me when I say I’m not alone. I’m pretty sure these access points are provided for those with a motorized mode of transportation. Add to that the small but difficult obstacles of raised thresholds, bumps and challenges in pavement and sidewalks and this quickly becomes a very difficult path. Finally, and my most favorite, the ramps are often too steep.
- Restrooms – One of the things that can be very difficult for me is negotiating restrooms. They are often difficult to maneuver in, the railings are often on my dominant side which makes getting down and up too difficult, and they are very often occupied when no other stall is. I realize this is a bone of contention for many but if you don’t need specialized options, please leave them for those who would rather use the “regular” facilities but can’t.
I’m learning from others about their challenges and needed accommodations. If we wish to welcome and love others, especially in our worship spaces, we simply must work on being more aware of their needs. During the recent General Convention for the Episcopal Church #gc79) I was a twitter stalker trying to learn all I could of the proceedings there. I also learned a lot more about the challenges of needing accommodation. We can’t just welcome some and not others. There are many with chronic or debilitating conditions and it is our job, not theirs, to make space and welcome for them. I’m referring to people with various forms of rheumatic conditions, birth defects that leave them other-abled, veterans, the hearing impaired, sight impaired, those with mental disabilities, people on the autistic spectrum and many others. Our world is not friendly to these valuable people.
During the convention, I was fortunate enough to follow a brave, well-spoken person named Charis Hill (thanks Rachel for the introduction). She happens to suffer from the same thing I do (Ankylosing Spondylitis) while she fends off many other challenges. She tweets as @BeingCharis and during the convention, she tweeted as @disableddeputy. I highly recommend reading her tweets. Another eye-opening article was found on the center aisle blog (https://centeraisle.blog/2018/07/12/disabilities-at-gc79-dispirited-then-motivated/). The author, KC Robertson, from the Diocese of Los Angeles when referring to the revival service had this to say: “I went with friends, snapping videos and craning my neck in every direction to take in the incredible site. It was euphoric. But that euphoria quickly turned into dispiritedness due to the lack of accessibility provided for my type of hearing loss.” I can only imagine how frustrating that was. It’s just one more way that we abled people miss seeing how things truly are for our “neighbors.”
While this is my new experience I try to learn to wait on and depend on others, for which there really isn’t a choice. I will do my best to remember others who will never know a life different from my current circumstance. It is so difficult to ask for the help of others when you need or want something. I will also work to remember how others feel when I actually receive help and find it so difficult to also accept the pity that comes with the help.
As I move forward on this journey I hope you will join me in being aware and responsive to the needs of others. Remember what many of our moms taught us – do unto others what you wish they would do unto you. Walk an extra mile, offer to help someone in need, even if it’s just to open and hold a door. Do what you can to walk a mile in the shoes of others.
Progress report: Down a total of 11.8 pounds. Currently trying to RICE (Rest, Ice, Compress, and Elevate) my left foot.