Sunday, April 16, 2017

Observations over the past few days

1.  For those who have been reading this blog pretty regularly, it might be apparent that one of the things I am most afraid of while living with ALS is losing who I am. That I will become the disease and no longer be me. While at support group this Saturday I met someone new, "Jack". Jack's ALS is further along than mine (honestly I don't know if that is the way to say it - more progressed?).  His voice is very quiet and he is difficult to understand. His body is still. However upon meeting Jack his personality shines through. He has a good sense of humor, and was pretty quick with a joke. He participated in our conversation on his own and with the help of his family. When I made a joke he laughed. Meeting Jack was a delight, and reassuring to me that one does not have to be lost in this disease.
2. I roll around my neighborhood pretty regularly now that the weather is beautiful. I often see this one family out on their driveway, or the sidewalk in front of their house, or their front lawn - a mom, a young girl, and her younger brother. Today the little one was attempting to ride his bike - probably for the first time - with his training wheels on, as his not-much-older sister was coaching him along. I rolled past and I could hear "one foot goes down and the other goes up" and "you can do this." Witnessing this moment of encouragement made my heart warm, brought a lump to my throat, and tears to my eyes.
3. The most peculiar things make me cry (see above). Discussing B12 shots with my doctor, seeing a dish in Wegmans that looked very similar to Grandma Bea's chopped liver dish (which I broke and will never forgive myself), and when people show me kindness.  I had the pleasure of bumping into my friend Nancy's parents and sister today. They stopped what they were doing to greet me with hugs and kisses and smiles all around. They are such lovely people and as I rolled away, I started to cry. Why would this small exchange make me so emotional?! Is it because I feel things more deeply, or I recognize the importance of small, kind gestures? Or maybe I am losing my mind?! (all of these questions are really rhetorical).
4.  Shout out to the Lawrence-Hopewell Trail! http://lhtrail.org/  Today Adam and I took the van to the parking lot at the Pole Farm and spent a good hour or more walking/rolling the completely power wheelchair accessible trail (note: the ground was very dry and I am not sure how the pwc would do in the mud). It was beautiful and energizing and so wonderful to not have to worry about whether or not I would be able to get my wheelchair through. The woods on the side of the trail brought me back to the woods I used to trek through during my childhood. The views across the fields were breathtaking. I am thrilled that Adam and I have found another outside activity that we can do together!



It was a little windy!


5.  Everyone handles grief differently. I overheard one end of a phone conversation in the mall a few weeks back. The woman on my end was expressing her disbelief that her cousin was still crying over the loss of her grandmother. After all it had been over a year. I wanted to shake her and say you do not have the right to put a time limit on someone's grief! I am seeing all different types and levels of grief as I meet more people with ALS. Some people are able to take that grief and turn it into something positive - advocacy, raising money for the cause. Some people wallow in the loss of what could have been and can not and/or choose not to move past that. All you can do is meet people where they are.

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