Helps ease Annie's medical and financial strain

My mom has been suffering from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue) for 20 years, a debilitating and relentless condition, typically characterized by extreme exhaustion that does not improve with rest, but has much more to it than that. CFS also affects the immune system, nervous system, and cognitive abilities. There is no known cause or cure. Being homebound, and left up to the whims of periodic physical crashes, she misses out on social plans, travel opportunities, visits with family and her children, things we take for granted that make life worth living, things she wants to do and can’t. These crashes are often brought on by stress, or exerting any level of energy. She has been unable to work, and often cannot get out of bed or leave the house for days, especially in the gray and dreary winter months in upstate New York. It has taken a huge toll on her, considering she had always been a vivacious, outgoing, motivated and determined person with a positive can-do attitude. Accepting a complete shift in lifestyle and physical capability has been quite a difficult adjustment for her.

As many of you reading this may know, my father, Monroe Couper, passed away suddenly and unexpectedly from hypothermia while climbing Mt Washington in 1994. He was a recreational climber and always up for a challenge. Mt Washington’s weather is extremely unpredictable and it changed on a dime with the onset of a storm. It was too treacherous for them to climb back down, with below freezing temperatures and high winds. He was a composer, educator, adventurer, a good and kind man, and relatively new father, as we children were only 2 and 4.

This impossible loss greatly impacted all of us. Being a heartbroken single mother, she still did everything in her power to take care of us, creating a childhood for us that felt as close to normal as it could be, all on her own. She had devoted her career to teaching at Kingsborough Community college, where she was a tenured professor, specializing in early childhood development, also teaching history, english, and art and was loved by her students. Devastatingly, she was unable to continue her career due to the quick onset of this condition, and forced to retire early while we kids were still in high school. If you know my mom, you know how caring, generous and warm she has always been; opening her arms and her home to all of our friends at any time, treating everyone with respect and grace, loving everyone who passed through.

It has been extremely stressful for her to keep up with the everchanging and rapidly rising costs of necessary medications, doctors visits and other bills, often sacrificing or cutting down on essentials, like food or power or heat sometimes throughout the years. Trying to figure out how best to treat this has come with enormous amounts of ‘testing’ different combinations of medications, supplements, and diet changes, and spending time searching for doctors who actually take this seriously, just for them to retire or leave town eventually, and she starts all over. She is currently living check to check on social security, and having to decide which expense is the most important at that moment. If her career had not been cut short, she would have about 10-15 more years worth of social security payments, depending on when she would have chosen to retire.

Over the last decade, she had to sell her house in New York, and was wrongfully sued by the buyers for fraud, if you can believe it, to get around an ‘as is’ clause (the house was in the same condition she bought it in). She put in work to landscape and beautify the property, installed a noise cancelling fence for the nearby highway, and kept the house in good order. She was advised to settle because fraud cases are expensive and can go on indefinitely. Even paperwork, phone calls, and meetings with lawyers can be too much to handle after a big move, which can physically take her out of commission for a year or more afterwards. This was entirely unexpected and a huge loss, and just absolutely insane of these people to basically drain all of her resources for no reason.

She has recently had to move again from an apartment that did not sufficiently meet her needs; without AC in the summers, aggravating her condition (ME/CFS causes body temp dysregulation), and steep steps, worsened by ice in the winters. The cost of her most recent move was unexpectedly high, $4000 including $500 for prepaid packing materials, and 3 guys to come pack and move everything. Only two showed and they brought no boxes or anything to do the move, they left about half her stuff and left early, with no financial reimbursement and no solution, forcing her to pay an extra month's rent to store the leftover items and hire another company entirely, as they would not return to finish the job. At the same time, her car needed a $1700 repair. Her car needs work again now, she probably needs a new one.

As well as assist with medical expenses, we would love to recuperate the losses from the last move, and try to help with her car. We are planning to move again one day in the future so we can be closer together and I can help her day to day, and to get away from the harsh winters upstate which greatly impact her energy levels. On top of the difficulty in carrying out such an undertaking, the costs become a major concern and hopefully anything leftover after essentials can be a cushion for moving.

I believe she has a bit of a hard time asking for help, so we are reaching out to those who know and love her, to please let her know we care for and appreciate her. All I want for my mom is some well deserved peace and ease, after giving all of herself to everyone else throughout her life. She can’t seem to catch a break.

Thank you so much for reading. Please consider donating, any amount helps, and share if you can.

So many thanks to all my mom’s friends, support system and community in Ithaca, for being there for her and helping with all the ins and outs throughout all these years. She is lucky to have you all in her life.

Special thanks to Charlotte Ghiorse, for helping with organization, volunteering to care for my mom and becoming her aid, cheerleader, and a great source of encouragement, when we are unable due to distance.