Throughout my life, I’ve had foundations that have guided my pursuits , interests, and energy. My main foundation has been Mary Ann and my kids.
Mary Ann has been my best friend since we met about 36 years ago. And she has been my rock ever since. She is the strongest person I’ve known. And her new role of being my caregiver is above and beyond what she asked for. This whole journey has taken so much away from us.
I ask myself sometimes if the roles were switched if I could be as strong, tolerant, and committed as she is to me. I think I can given how circumstance directs the actions we take, but I am still unsure. Each day she uses a lift to transfer me from chair to bed to commode. She dresses me, keeps me looking good, and sometimes even feeds me. She is house secretary and van driver. She told me one reason she can handle it is because I can keep her laughing and make light of our predicament. That is a lesson worth learned – humor and attitude have a big impact on how we live out our days. Then again, my situation is not without extreme stress and frustration. I can be demanding of my needs and can frustrate her to the extreme. We’ve been through some challenging situations, between traveling, using medical equipment and just bad days. We can get quite vocal with each other, and then finally apologize, most often me being the one seeking forgiveness. I’ve learned (well still learning since I still need to be better) to be so much more sensitive and respectful to her and all my care givers.
My kids are my other foundation. They’re all adults now and making their way through their lives. I’m proud of all of them. Max is ambitious and driven to pursue extreme sports and the great outdoors. Since my diagnosis, he has been so much more committed to our family, constantly driving down from Tahoe to hang out and help whenever possible. As our first child and the toughest to raise, he has turned out to be a wonderful, caring adult.
I’m proud of Lucia for taking risks and benefitting from her experiences. Getting through school, a two-year Peace Corps assignment in Nepal, and returning to graduate school. She has taken my situation in stride, taking me as I roll and being attentive. She loves hanging out with our older friends and has plans of taking me to the beach this summer. Her positive attitude is contagious.
I’m proud of Ethan for knowing what he wants and pursuing it. He changed high school and college, reinventing himself along the way. Deciding to go to school in England was a huge risk. But he did it and it changed his life. He now works at California College of the Arts and doing well. I will share he has had a difficult time dealing with my illness but its understandable. I can’t imagine how I would handle this given a reversal of roles. I keep checking in with him to see how he working through all of this. He’s the only one who asked if he was going to inherit my disease. I assured him of the complete randomness of it and must be the least of his worries.
I am content in knowing what mensches my kids are. They are concerned and productive citizens of the world. They follow their designs and are not shy of them. Its humbling how much attention I’m getting from them, though I keep reminding them to not put their lives on hold because of me.
I’ll be honest to say I considered the fact that I won’t experience grand children. I want my kids to have kids only when they are ready. I am at peace knowing likely Mary Ann will have them in her life assuming my kids want them. But that is more of a passing thought. I am focused more on each day I have with them. Yes, it saddens me sometimes to face the reality of a shorter time to be with them, but I’m grateful for the time I do have right now.
Another of my foundations is my sister Anita who has made the effort to be with me every few months. We’ve become closer ever since our mother died. We’ve both made the effort way before my diagnosis to keep close and visit when we can. Mary Ann, Lucy and I were at her home in NJ for Passover about 3 years ago, which was a highlight, as well as my nephew’s wedding in NY. Then my diagnosis brought her out a number of times since. Family support is so meaningful to me. It provides a level of comfort I took for granted for a long time, and now I cherish each time we’re together. Our history brings a normalization to me – especially when during her last visit, she shared old photos of our parents and family. We all come from somewhere and it’s been fun for us to dig into our past to learn more. I guess the lesson learned here is to not put off time with family. Even if the effort might be inconvenient, the pay back is priceless.
My other foundation is my friends. I’ve been truly blessed to have an amazing set of friends who I’ve known for many years and friends I’ve known for a shorter period of time. I’ve been fortunate to have s many of them near me these days. If not for them, my suffering would likely be overwhelming. And it’s not about the meals they constantly bring, but more importantly the expression of love and commitment. Its humbling because I wonder where it’s all coming from. Was I that good a friend to them? Did I not neglect some relationships along the way? The answers come directly from them. They tell me its payback for all I’ve done cultivating my relationships with them. They tell me I’ve always been the organizer, the connector, the shoulder and the muscle when needed. For that, I say “I accept.” Its a really hard thing for me to do is to accept others help. They ask if I would do the same for them, and of course the answer is yes. So they tell me to shut and enjoy our time together.
What amazes me is the length my friends have taken with me in helping me get out and enjoy life together. In January, they helped me on and off an inaccessible tour bus in Cuba. They got me in and out of bed and helped with toileting during Mens Weekend. And they bring me to ball games and the movies even when I spill my beer and food all over me. I have read that it’s good for ones psyche to help others, but I know it’s not their primary motivation.
My enduring friendships have sustained me over many years. I met my most long term friends in 1973 at Camp Lymelight, a camp for the handicapped in upstate New York. Some I’ve been hanging with for over 40 years. Some friendships were disconnected until many years later when they were rekindled again. One of my passions over the years was to arrange a men’s weekend. This went on for 30 years and is still going. It has provided a wonderful space for 10 of us to build strong relationships. It has been a ritual we all wanted to sustain. And most times, until recently, it was in Yosemite in the winter. I thought we’d be doing this well into our 80s and I hope it does endure, whether I’m there or not. And over the last 5 years, we expanded it to include a summer retreat to include our spouses, called the People’s Revolutionary Weekend.
There’s more about My foundations to come.