So, while riding my battery operated wheelchair around my house these days, I’ve been constantly reminded of how I need to find balance in my everyday life with ALS.
There are days in which I’m at a very slow speed, not wanting to get up, afraid that if I do I might lose my balance and fall. Other days, my full pedal to the metal puts me at rabbit speed and I find myself with hundreds of thoughts going through my mind. What do I need to do to obtain my goals for today? This week? Maybe finish working on that list of usernames and pass codes so that Allen and my daughters will be able to manage my online banking, car payments, insurance, tv/internet/phone, and a number of other household finance accounts that I’ve handled over the past 42+ years, in the event that I won’t be able to do it in the near future. I continue to make sure that I’ve taken my pills, looked at the daily planner to see what appointments I have, checked in with friends on setting up certain days that we can get together for a visit, or being sure that I’m still available to help out with my grandchildren in some way– after school, early release, or just for an impromptu sleepover at Nonnie and G’s. Something that has taken me away for many hours weekly is checking in on social media and continuing to connect with my community both in my personal circle and that of the ALS community. I am beginning to recognize the loss I am feeling from not being able to do many of the things I used to do before ALS and not to be in denial, but, on the flip side, I am trying so hard to continue to turn the here and now into GRATITUDE.
You see, the speed control on this spiffy wheelchair I now use has a picture of a turtle on one side and a rabbit on the other to adjust the speed at which I make my way around the downstairs of our home. If you look closely at the doorways, refrigerator, kitchen cabinets, and any other areas in our house that I’ve tried to maneuver around, you will see that at times the rabbit speed has taken over. The wood has chipped off the doorways, and the new scrapes have appeared on the appliances when I have gotten too close going too fast. At those moments of impact, I am reminded that I need to find a balance in my everyday life–not just in my wheelchair speed, but in taking each day and looking at what I can control and what I need to just let be!
It is very important for me to continue to let my family, friends, and community know how grateful I am for loving and supporting me and my family. I’ve been overwhelmed by the many cards, calls, emails, and texts of encouragement. This past year has given me an opportunity to connect with old friends and family who have always been in my heart. I have been able to have conversations with them to let them know the importance of them being part of who I am today. From my childhood best friend, Linda, who will always be my bff, to the new friends I have met through the ALS community that share so many similar highs and lows of having a terminal illness. I have been able to receive support from my medical team, who are the most compassionate group of people I have ever met, and very smart too! I actually look forward to my check-ups at the MGH Clinic and at the Sean Healy Center for ALS. Every time I go into Boston, I can regain some confidence in myself and have the opportunity to share with them that I am not giving up and neither are they. They continue to offer HOPE and let me know that I am doing really well, considering I stroll in with my wheelchair and struggle to get myself off the toilet in the handicap bathroom at times!
A year has passed since sharing with family and friends of my diagnosis and putting it out there on social media with the world. When I think back to a year ago, I am amazed at how much my family and our community has helped me to accomplish bigger goals when we were all at “rabbit speed” trying to figure out this ALS life. Not that it can ever be figured out, but I am now realizing that I need to find that balance of doing what I can, how I can, and being able to also recognize the loss that I have personally experienced with the many things that I was able to do without ever even contemplating turtle or rabbit speed! That is the weight of this disease: wondering, worrying, planning for the inevitable. I try not to go there too often and if I do, I quickly tell myself I'm going to turn it around to be grateful for all that I have and all that I will continue to have moving forward, whether it is a turtle speed or rabbit speed.
What continues to keep me balanced is my loving family and my incredible circle of friends. Since my diagnosis, both of those circles have grown by 4 great nieces born into the Drinkwater clan, two Drinkwater nephews getting engaged to the loves of their lives, and two other friends’ children getting engaged. So much to celebrate, so much to look forward to, so many parties that the Patti Party crew will be at. As this last month of January is coming to a close, and our youngest grandchild will be celebrating her sixth birthday on the 28th, I just wanted to be sure that I slowed down long enough to put my thoughts down and to remind myself that, as the old saying goes, “slow and steady wins the race” and that this race called ALS isn’t the only thing that defines me. I love you all and thank you for your continued love and support! Just know that 2022 is going to be a great year! By the way, I’ve never looked forward to growing old as much as I have before, but for now I’m going to go wrap presents for my beautiful granddaughter’s 6th birthday party. Power on, speed set at turtle, here I go!