My name is Elisabeth, and I am writing this for my brother-in-law Sean and my sister Ali. As many of you know, my sister and I are extremely close, and I have talked her into allowing me to ask for some help from their friends. There are times we all have to reach out for help, even though it is hard on our pride. As I heard her story unfolding, I thought about what I could do to help, what we, as a community, could do for two people who have given so much of themselves to the artistic community of Cleveland. Sean, in his work at Cleveland Institute of Music, and Ali, who has worked so hard for years as an actress, musician, and designer while also working part time jobs, and then dreamed of bringing theatre to the children of Cleveland. Through the strength of her will, and the help of her amazing staff, Ali created Talespinner Children’s Theatre.
Two and a half years ago, Sean began having health problems. He began missing work due to extreme headaches, dizziness, and loss of coordination. After over a year of intense pain and many visits to specialists, none of which could identify what the issue was, Sean had what at first was thought to be a stroke. Due to this event, a neurologist finally identified that he had MS. That was a little over a year ago. The disease has been very aggressive, and has left Sean unable to work. His short-term disability has run out, and the future is uncertain. Even with an excellent insurance plan through his job, the out-of-pocket medical bills are already into the thousands of dollars due to all of the medical needs both pre- and post-diagnosis. Sean is currently waiting to qualify for long term disability through his employer and possibly Social Security, which is not guaranteed. Meanwhile, he is in the “doughnut hole” between short term and long term disability and is without income, as well as now paying COBRA rates for his insurance, which he must keep up to be able to continue to get the medical care he needs. Ali’s theatre is a small, not-for-profit organization with a small staff. Suddenly the sole income earner, Ali is looking for other avenues to earn extra revenue through adding other employment to her schedule, coupled with already taking time away from work to make sure Sean has the care he needs. Medical bills and added insurance costs have stacked up against them, and so they have reluctantly agreed to allow me to reach out for help. Hopefully this is a temporary situation, but the future is uncertain. I thank you for reading this, sharing this, and for your loving thoughts.
In Ali’s words:
“My husband is one of the bravest, kindest men I have ever known. Sean has been struggling for two and a half years through intense pain, debilitation, and the frustration of having to make enormous life changes that impact both of us. A little over a year into all of this, he was finally diagnosed with MS. He has been fighting very hard to help us keep our heads above water, but the rapid progression of the disease has left him, left us, without a lot of options. His employer has been amazing, but his short-term disability has run out, and now we are in financial limbo. Even with the insurance (which we risk losing very soon) from his job, we are left with enormous medical bills—bills that will only continue to grow as time goes by. I work full time, but it’s for a very small non-profit, and what I make can’t even touch those. Social Security is an option, but even if it is approved, it could take six months or longer to kick in, and with the way things are now, who knows what it will even provide? Right now, we are in a very frightening financial place, and we can see more life changes ahead that will not only mean fewer possible options, but will also compound the existing medical debt at a fast pace. It is not easy for either one of us to reach out and ask for help, but we are pretty much at our wit’s end as to what else to do. We have each other, and that is strength, but we have fallen into a pretty deep hole right now.”
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