I didn’t get the news via a phone call or in person. I mean, we had been talking about the possibilities. Actually, she had been talking about it more than me. I kept shying away from the possibility because the thought was just too much for me to even entertain.
When I got the news that my mom had ALS, it was through a text she sent after two days of medical tests. It only said, ‘Worst fears confirmed.’
Mom always made it clear the history of ALS in our family and how many people it had taken in recent history, including her own mom at the age of 58. Her mom was diagnosed in the month of July and died in December of that same year. My own mom is 65.
ALS shows up two ways. 90-95% are random cases, which the medical community cannot figure why it comes on or how. There is no test to pinpoint it. The diagnosis comes from process of elimination and general symptoms. The other 5-10% of all cases are hereditary by a dominant gene that is passed down. This can be tested. Within those numbers, 50% of those with the gene has the disease expresses itself and is the ultimate cause of death. Based on my experience in our family, it’s a relatively swift progression from diagnosis to death. Within a year’s time of diagnosis.
ALS is short for Amyotrophic Lateral Sclerosis. It’s also known as Lou Gehrig’s disease, named after the baseball player. It is a progressive neurodegenerative disease. I know, mouthful. Basically, the brain slowly shuts off signals to the muscles, eventually leading to total paralysis and death. It’s still pretty rare, only about 20K cases a year, but it seems every time I bring it up with someone they say, ‘I know someone suffering the same thing.’
My mom started having problems with tripping over her right foot back in late summer of 2014. By this writing, early April of 2015, she can barely walk, her right leg being almost completely useless. She can’t lift her arms up over her head (no pull over shirts or shampooing her own hair), and is already having troubles gripping onto things with her hands.
Even just writing these words makes my chest tighten and my lips purse as I try and hold it together just long enough to finish this entry.
It is a heartbreaking disease. But aren’t they all?
Interestingly enough, the cognitive part of the brain is not affected. When I sit with and talk with my mom, the only difference now is it is a great challenge for her to move and needs assistance to do anything physical.
But this isn’t about this disease, although it weaves itself throughout our family and has created a history of its own taking many relatives far too early. This is about my mom, who is pure magic, and our time together, which has been pure magic as well.
She has been my best friend since we met on that warm spring day. It’s been 23 years since we were reunited. To us, this isn’t nearly long enough to do all the things we had hoped to do with each other and share all the experiences our souls are having as we journey on this human existence. Perhaps there is never enough time.
This is about how we met, how our relationship grew, and the adventures we have had together. And it’s about her; her spirit, her love and her unbelievable ability to tune to what IS, and who forever and always answered the call of her soul before anything or anyone else.
I have had some powerful and insanely profound teachers in my life and she was the first one.
Before anything else, though, I want you to understand my adoptive parents have always been and continue to be some of my biggest supporters. I love them how any child loves their parents and I am in deep gratitude to them for loving me to the best of their abilities and for continuing to not only support my relationship with both my birth parents, but for developing their own relationships with them. This would all be so different had they not been there and for that, and am forever grateful and I know we have fulfilled our contracts from the other side.
I grew up knowing I was adopted. I knew the whole story my parents had told me of how they had hoped I would be their Christmas gift (I was born in mid-November). Because my ‘birth mom’ had been stubborn about signing the paperwork, I was placed in a foster home until after Christmas. Later I discovered my birth mom had requested to spend a few hours with me before she signed the adoption paperwork the county required. The county refused her request, so she refused to sign the paperwork. Even then, my birth mom was very independent and headstrong.
Eventually, after several weeks, the county gave way to my birth mom’s request. She held me for a few hours then handed me over, signed the paperwork, and that was the last time she saw me, held me, and touched me. For 25 years.
Later she would tell me through all those years she would see a baby and wonder about me, or see a shop with toys or children’s clothes and worry that I was all right and question if she did the right thing.
She had become pregnant at 17 in high school back in 1966, during the skyrocketing of the freedom movement, Vietnam, musical geniuses, and forward thinking. The possibilities were endless for young folk.
My mom’s parents were strong in their Pentacostal faith, teaching her in her younger days that wearing lipstick was a sure sign of going to hell. Her grandfather was a minister in the little church where she grew up. She, with her free spirit, long hair, and rule breaking approach to the norm was the black sheep of the family. I fully understand this feeling being the same in my family.
They had agreed for her to keep her baby, but they insisted they would be the ones to raise the child. Recognizing how much there religious convictions had messed her up, she declined and decided to adopt me out when the time came. Her relationship with her parents, especially her father, was never the same. Her dad gave up any hope of salvation for her and let her know it on a regular basis through his actions towards her.
After she announced her decision that was the end of any conversation in the family about any baby being born out of wedlock. No one in the family knew that when She left the little town of Windsor, CA, to live with a couple and their children in the SF Bay Area, it was to hide her pregnancy. Even her sister knew nothing until after my mom and I had reunited years later.