It all started with a not-so-nice situation. Carmela, my partner, David’s 98-year-old mother, was complaining of stomach pain. When anyone is as old as she was, everyone is on alert.
Family rallied and soon found out that she was refusing all treatment to deal with her stomach issue. She had endured enough medical procedures and sounded as if she were done with her life.
Hospice was the next step, as she was given morphine to cope with the unrelenting pain, a likely result of her diverticulitis. Things went from bad to worse as she deteriorated significantly in a matter of days. She lay in her bed, crying in pain, clutching the bed rails in sheer agony.
I wasn’t there, but David conveyed the graphic details to me. Because of stomach blockage issues, Carmela continuously threw up. The family unflinchingly dealt with this tragedy by coming in, in shifts. She was finally put out of her misery by passing away and crossing over to her next world.
How We Learn From Death, Tragedy, and Stressful Situations
One doesn’t always learn from books or instructors; lessons come in different forms and ways. Lessons also come out of unforeseen situations, such as accidents and death. Death is exactly what happened here, which taught me a few things, not only about Carmela’s life, but about mine as well.
Of course my tragedy and suffering is of a different sort than Carmela’s. First of all, I am 56 and not 98 like Carmela was. I have had chronic illness, multiple sclerosis (MS), for more than half of my adult life. I have given up clutching at bed rails, probably because my situation is slow and chronic, not fast and acute.
I would like to take this opportunity to share my week. I have talked about being alone in previous writings, but not like this, not left alone with only a day to prepare. David had to leave to be with his mother, but he did his best to help me prepare for being alone — for how long we weren’t sure at that point.
All I can say is thank goodness it is autumn and not winter. Winter brings with it added chores that I can't do anymore.
What I Learned From My Time Alone
In the end, I was alone for a week. This meant minding myself and the house.
It’s no secret that I have been here before, but never for that long. I really had to provide structure to my life so that things got done correctly. I learned some important lessons along the way.
It’s important to point out that this would never have happened had tragedy not taken David away from my universe. So out of this tragedy came life lessons for coping with secondary-progressive MS.
My room is upstairs, separate from the rest of the house, because I like to have my space. I just cannot sleep in the living room, and I look forward to going upstairs to sleep at the end of the day. So that is the first thing I had to consider: going upstairs. As much as this act scares everyone else, I have my technique for climbing the stairs.
RELATED: What Is It Like to Live With Secondary-Progressive MS?
I Had to Watch My Energy Level
Lesson number one: I began my “being alone” time with learning how not to get too tired. Everything I did during the day revolved around watching my energy level.
When nerve fiber fatigue sets in, that is an immediate recipe for not only accidents but also for losing my sense of judgment. I had to be fine in both those areas at the end of the night, so I was able to go upstairs.
I Used My Social Network for Company and Help
Lesson number two: Social networks and community help. Having someone stop in every other day or so helped me to be alert to receive them. That way not only did I have company, but also things I required help with got done, such as putting away dishes, laying out my next meal, or watering plants.
I realized quite quickly that meal prep was the hardest activity I had to deal with. This is where friends helped me realize the importance of social connections.
I love my friends and the people who helped me accomplish basic tasks. A friend bought me some microwavable popcorn, wasabi peas (my favorite), blueberries, cashews, and raisins! These are small gestures that mean a lot.
I Took the Time to Set Out Some New Goals
Lesson number three involved charting out new goals. How many times has this one been a priority?! Taking stock of my life and realizing the place I am in and what matters and what doesn’t is an important step to realizing where to start. And it is not that hard to recognize where one is at.
I have recently begun a new disease-modifying treatment (DMT). It will not improve my situation, but its effects will be evident on MRIs showing fewer lesions related to MS, therefore reducing disability over the long term.
One important new goal is one involving taking care of myself. I have started feeling steadier knowing “I am where I am.” So I have asked my neurologist to write me a script for in-home physical and occupational therapy. I need to take care of myself and rejoice that I am being proactive.
Not only am I taking a new DMT, but I am also making a concerted effort to slow down disability.
RELATED: The Power of Setting Goals for People With MS