I was fraught with anxiety as I contemplated my return home. How would I get down the stairs? A perplexing question because now I must use the wheelchair exclusively to get around. How would I feel being back in my apartment as a different MS person and patient? Well, as it turned out my daughter and her friends carried me in my wheelchair down the steps, six of them. After thanking and hugging all of those strong young women for getting me down that blasted stairway, my daughter unlocked the door and I rolled on in. I was finally home.
My place looked the same. Furniture in the same spots, pictures on the walls remained the same. Everything was the same in my apartment…except for me. The two exacerbations I had during the summer of 2017 culminated in a third and final one just before Thanksgiving. One which really knocked me on my butt, putting me into the hospital first, then to a rehab facility for nearly six weeks. No, I was not the same. I was different. My head was swirling with uncertainty about my condition and my heart was fearful about my future fate with multiple sclerosis. I was shocked and dumbfounded that I had gone from walking with a rollator, to not even being able to stand.
While in rehab, physical therapy helped me to rebuild some strength and balance, but I still was not the old me and I was not happy about that. So being home, the same home, was not really home yet, because in my mind it included getting in and out of bed on my own; not with my daughter’s assistance using a gait belt. Home a few short months ago included me standing in the kitchen (even though I had to hold the counter for balance) to cook. But those capabilities were and are gone, for the time being at least.. Home had now become a continuation of rehab and stark dependence.
I had acquired quite a schedule now that I was “back”. I had a nurse coming a couple days every week, an aid coming two times a week for bathing and a physical therapist at least once per week. Don’t get me wrong, I’m very grateful, but this did not fit my narrative of being home. I had wished and hoped my homecoming would include me being recovered completely from that last exacerbation episode. But um….no.
So now the reality and the disappointment was before me and I realized I must keep working on my physical strength, my mental strength and spiritual growth.
For the past few days I’ve been thinking about a dear friend who died a short time before I went into rehab. She had cancer and after exhausting all treatments, she passed ending her suffering. One of her daughters misses her so. This grieving child’s heart wrenching Facebook posts are so very hard to read.
Well, I’ve shared my experience, and ranted a bit so I must go now. It’s time to have dinner with my daughter, in our apartment, together. I am alive with my loved one sharing a meal and sure to also share a laugh or two this evening.
The truth is, I truly am at home.