“A little to the right”, I say to my caregiver at night as she positions my legs in bed for the night. That is my feeble attempt to maintain some control over my life even though I have multiple sclerosis (MS). What started out as a difficulty in lifting my legs and maintaining my balance has now progressed to using a wheelchair, having a suprapubic catheter and trach,and having aids feed me, bathe me, dress me, and perform the necessary activities to maintain my hygiene.
After being diagnosed with MS, I was in denial and did not realize I was going through the stages of grief. I was scared. An ayurvedic practitioner prescribed a specific diet that I adhered to religiously because I thought it would keep me from getting worse. The fear of getting worse increased my adherence to routine.
While I was still using a walking stick, I joined an MS men’s support group. I was one of two men still able to walk. Everyone else was in wheelchairs, and some of them had aids helping them operate their wheelchairs. This was too much for me. The thought of being in a wheelchair with an aide terrified me. I wanted to leave! But then I noticed these guys were laughing, talking sports and politics, telling jokes. These men were coping and living and this made me feel less afraid and I thought, maybe I can cope too.
In January 2019 I was in the ICU at Georgetown because of sleeping-medication delirium and pneumonia. At some point I saw my wife’s eyes and tried to talk. I was unable to make any sound because I had a tube in my throat; I was intubated, connected to a breathing machine, and had a feeding tube in my nose. I tried to ask, “What the f— happened? Where am I?” But I could only move my eyes. I tried to say, “I am ready to go to hospice.” My son was looking at me with a mixture of sadness and fear. My family stayed by my side and I felt loved. Members of the congregation brought food and helped them during this difficult time. Coping was the obvious choice given all the love I felt from my family and friends.
While in the hospital I was asked “What is my reason for wanting to live?” For me, family and loving friends (and the taste of food). The bottom line, the motivation to continue living is to be with my family and friends. Their love helps heal me and it is what sustains me now. I am grateful for that love and for the love and help I get from my caregivers. Receiving love grounds me and exemplifies “the essence of life”. After returning from the hospital, many people from the congregation brought delicious food that was greatly enjoyed. The caring and love that went into the meals brought smiles, joy, and love to my soul. Being a member of a group, having loving friends and loving family members with whom I can share, cry, and laugh makes living and getting up in the morning an obvious choice. The alternative is not even considered.
Stuart Baum
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