As I lay on the floor, with sobs wracking my body, I hear myself uttering the words; “Why is this so hard?” I was trying to do something Steve and I had done together in the past and of course, he would always make this mundane chore fun for me. It was also something that most people take for granted and may complain about (myself included).
I was trying to change the sheets on the bed. After about 15 minutes of frustration and tears, I was finally able to figure out how to put the contour sheet on the mattress. It was something as simple as that which brought me to tears.
It is the unseen symptoms of my neurological issues that sometimes cause me the most distress and frustration. After Steve took his own life in 2015, I was left with many responsibilities to do alone. Not having Steve to make me laugh while doing them, has made it so much harder for me to get through some routine tasks. These tend to be very simplistic in nature, things we learned as a child while we developed our cognitive and fine motor skills, such as tying shoelaces, wrapping food in saran wrap or trying to put an item in a knapsack or box. Ironically, some of my physical therapy exercises make use of childhood development tools like peg boards and necklace beading.
A friend of mine has had Parkinson’s Disease for many years and I always remember thinking to myself, why is it so hard for her to put on her seat belt? Again, this is something that comes as second nature to most of us. Although I cannot articulate it, now I know why it was and still is so hard for her.
Sometimes I am so puzzled as to what is physically happening to me. I never know which body I am going to wake up in. One of the things I find so hard to comprehend is my loss of strength in doing certain activities, like lifting the mattress corner to make the bed, or turning a door knob. Yet, I am doing the same weight workouts in the gym (without reducing the weights) I have done before my movement disorder symptoms started manifesting themselves. The medical professionals tell me it is different neural pathways… go figure.
However, I have hope. I will continue to fight my neurological issues with a plant based diet, alternative medicine, meditation, yoga and physical therapy. I truly believe that my body is temporarily out of balance due to the extreme trauma of losing Steve and the stress filled years before and after his death. As Steve would always say; “The Beauty is in the Balance”.
I will continue to strive to find that balance once again.
How u put all these feelings & everyday tasks into such an understanding & explainabe way is such a gift!! I feel much the same way, not because of the loss of my soul mate of 44 yrs. to this devistating desease, but due to other past & present situations in my life the past 4 years!! Not many r even aware of my struggling as I do as I’m sure u try to do too…put that smile on & “I’m going to b OK!” BS out there for all to see, then crawl into my “darkness” & pray to get thru each day!
ILY Jeanie! I hear ya, I got it & pray for u all the time!!! xoxo
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Hi Lori,
Thanks for your comment. I am so sorry for the loss of your soul mate 😦 You are so right about people not seeing the struggle, most say I look great, but I am torn up inside over the loss of my soulmate and dealing with my neurological issues. I am with you in looking forward to crawl into my darkness every day. SO hard to keep my head above water…got to take it a day at a time…. xoxo
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