Every few years we are awarded an extra day in February. Today, February 29, 2016, is that day. As I think about the quote above, I wonder about my own connection to leaping. You see, for someone with a neurological movement disorder like Cervical Dystonia, a leap for me might be the equivalent to a small step for you. During my lunch with a former colleague yesterday, I described how one of my leaps, laundry, can take up to a week to complete. When I do my laundry, the whole process may take that long: gathering my dirty laundry, getting it to the basement, washing, drying, bringing everything back upstairs, folding, and finally putting everything away. Prior to my diagnosis, this routine task was just one small step in an otherwise busy day, and I could get it all done in one evening. My lunchmate sighed and said she had no idea such a “simple” task could be so much work for me.
I remember the days when my leaps included my desires to do some risk-taking: skydive, parasail, and hangglide. If my neck maintains its status quo, these desires will continue to be dreams, dreams that I can happily watch my friends and family pursue. However, today my leaps include cooking, vacuuming, cleaning out the litter box, picking up after my dogs, doing the dishes…You get the picture.
“Leap and the net will appear.” As I continue down the path of unknowns, constantly battling the Social Security Administration to approve my Social Security Disability, I wonder what I actually can do so that I have faith in the existence of a net. Did you know you only have so many years to apply for Social Security Disability Income (SSDI) before they lock you out? Since it is so ineffiecient, this means someone like me could wait 3 years to be denied and then get locked out of the system while in the process of making a new claim, all because the administration only gives me 5 years to secure an approval. So in my case, it’s imperative that the SSD process gets fixed before the end of 2018.
Thinking outside the box then, what can my alternate leap for income be? It only takes 1-2 hours of being out and about before my pain levels and symptoms soar to an 8 out of 10. I thought about offering my services to create personalized gifts for people, similar to the ones I make for my family. For example, last summer I designed my parents’ 49th wedding anniversary poster with an “A Prairie Home Companion” theme. At the APHC show that was held on the Great Lawn at Macalester College last July, I got the entire cast to sign the poster, in addition to many of the musicians. This was fun for me to do. Yet, it’s a lot of hard work.
Would this kind of work be feasible physically and financially, since I would need to charge by the hour? Some of these gifts take a long time to produce because there are so many layers to my creative process. Would affordability become an insurmountable issue for my “clients”? I don’t know. All I do know is that I need to brainstorm some ideas for leaps I can take when it comes to making enough money to pay the bills, not only considering my vast skills’ set but also my physical capabilities. At this point, I don’t trust that the net will be there to catch me. Each denial by that uneducated “someone” in the SSDI office makes the possibility of having a safety net even more unlikely. Unless a disorder is in the SSD Blue Book, our evaluators falsely assume we can work.
Are there jobs out there with limited hours that I could actually do? Due to the tasks involved, I know that taking care of other adults isn’t possible for me. If you have Cervical Dystonia and your symptoms have also made it impossible for you to have a full-time job, I’d love to hear about jobs you’ve been able to do on a part-time (or less) basis.
What are your leaps that you encounter? What are the leaps you yearn to make? Are you afraid? I suppose they wouldn’t be considered leaps if there wasn’t a tiny piece of fear or energy commitment involved. Leap Year Day reminds us to ponder the leaps we’ve made and those we have yet to make. While they may involve a lot of work, stress and pain, we can also find gratitude in the ability to make the jumps within our reach and just beyond.
My Hopes: For myself, I hope to identify several Plan B’s for income as I wait out round 2 with the Social Security Administration. Of course, my greatest hope would be for the Dystonia Medical Research Foundation to get Cervical Dystonia listed in the SSDI Blue Book so that an approval is more likely to occur for those of us who truly need it.
My hope for you is to consider your own leaps, and identify what they are. Also, think about how many of your daily tasks just might be leaps for people with a disability. Is there any way you can help someone you know, keeping in mind that many of us have disabilities most people can’t see? Or is there a way you can be helpful to someone you encounter during your day? For example, I sometimes see people with walkers having to stand when there are no more chairs available. Are you someone who can offer your seat to that person without compromising your own health? I can’t, since I need to lean back to hold my head up, but I see little things I can do every day. If we look hard enough, we all can.