THERE’S NO PLACE TO GO BUT UP FROM HERE

Me, not looking so well

        It took being put to bed by paramedics at 6:30 PM on a Saturday evening and staying there until 9:30 AM on a Monday morning for me to “get” that I really needed to hire more personal care attendants (PC A’s). Upon their return, the head paramedic inquired whether I had enough help, adding that it really wasn’t “their job” to get people in and out of bed. Jackie, who’s been with me as my main PCA and overseas my life, assured him that the circumstances were unique.

        As if It wasn’t enough to have multiple sclerosis and be a power wheelchair user, I had been running a temperature prior to having oral surgery, where, to my dismay, two teeth in the front of my mouth had to be extracted due to fractures, decay and bacterial infection. I had been in denial about having the infection because I already experience so much sensory phenomenon and pain related to having MS 24/7 that I didn’t take the symptoms of tenderness in my mouth seriously.

        I had grown accustomed to and took for granted my ability to transfer out of my queen sized bed onto the commode, out of the power wheelchair into the shower chair and back again after bathing myself.  For the most part, I was independent.  Over the years, however, I had also grown accustomed to having to wear a an adult diaper when going out for any period time, but to date, hadn’t needed to wear one at night.

        I wear one of those “help I’ve fallen and I can’t get up buttons,” and I use it. In this case, Pam, a friend who lives nearby, had come over to assist me in my post operative need for, among other things, hydrating myself. I was on my third round of a strong antibiotic and was forcing fluids in an attempt to also flush toxins. When it came to transferring into bed for the night, I was too weak. The paramedics had to move furniture and me into the bed, a task that rendered me embracing a new level of humility. I remember not caring that I was butt naked in a diaper. I remember asking to be moved more toward the headboard and a little to the left so that I could reach the grab bar. For some reason I thought I would still be able to sit up.

        I was wrong.

        The night prior to the oral surgery I was coughing. Unfortunately, I had ”picked it up”… the flu! I remember listening to the bazaar somewhat melodic wheezing in my chest between coughs, and was impressed that I thought to and could  position a small pillow underneath my head to elevate it. Unfortunately, not sleeping much the night prior to having the surgery didn’t add to my overall well-being. How I managed to shower myself that morning in preparation for Carmina, who came in to help me get my diaper on and get dressed for the surgery remains to be one of those mysteries to me. I know I prayed. I know I did EFT. (The emotional freedom technique) I did not know that would be the last shower I took for sometime.

        I was relieved when Pam, whom I felt I was taking advantage of at this point, agreed to be on the payroll Sunday morning. She filled out the paperwork, then, not four hours later, realized that 1) it would be deducted from her unemployment check, and 2) after the fact, her own needs in being sensitive to food department kicked in to the point where, having, by  10:30 AM, pooped in my diaper, she informed me she couldn’t come back to help me and that it wasn’t going to work out after all, “I’m sorry.”

        I was devastated. I’m glad I had thought to ask her to bring me the list of phone numbers of friends and acquaintances and my phone, both of which were within reach. I had access to my glasses(which I prayed I would not drop). I had thought to have food made ahead of time, albeit soft (hummus, guacamole, green soup, yogurt) but I hadn’t anticipated having 101° fever and not being able to move.

        I spent the next 72 hours wheezing, coughing, throwing up, and having to swallow it because I was lying on my back.  I wasn’t able to rinse my mouth with warm salt water, but, thankfully, did not experience pain as a result of the extractions;   a true godsend.  I observed what felt like brain cells going on in their own journeys, morphing into other galaxies. I had no choice but to contend with my legs spasming, my left hand not being able to open and a restless right leg that was hard-pressed to settle down.  It brought new meaning to the idea of being in the present moment and surrendering. At one point my nose was stuffy and I asked someone to bring me nose drops. It was one thing I thought it could control; at least I’ll be able to breathe.

        Within minutes I felt like I had swallowed razor blades and regretted doing that. I remembered giggling a little bit, thinking how insane this all was. I remember how Carmina came to my rescue and, to my delight, revealed her expertise in being able to roll me to my side, remove the wet and soiled diaper and clean me up. I remember her rejoicing with me when I was finally able to partially sit so she could put chucks down on the bed (they absorb liquids and keep the mattress intact) She made the best scrambled eggs.

        I felt sad when I realized that of all the people on my phone list, there were only three that I felt comfortable asking for help and weren’t busy. THAT’S when I had to admit that I needed to hire another PCA.  Now. Over the years, I’ve given people raises; I use my allowance of PCA’s very creatively. It works for me. I do the things that help me, like getting range of motion on a regular basis. And I’m not talking about just lifting my knee and my foot in the air, either. I’m talking about getting me on the massage table and basically moving my pelvis, legs and feet for me because I can’t. I figured all that I would need to know to pull off finding and hiring a new PCA would be told/shown me when the time was right. In that moment, ensuring that I had some nutrition in me and that I wasn’t totally ruining my mattress were priorities.

        It really was an unfortunate “marriage” of what could be perceived as bad timing and exposure to germs warfare. Eventually, I came to view it as the healing crisis I needed to slow me down.  Once the “stinking thinking” that accompanied being sick subsided, I was able to embrace my frustration and judgment about how long it was taking to get my strength back. I had to surrender to the reality that I would be exhausted after even a minimal amount of exertion and had no choice but to rest.

        A week later, on a Monday morning, I placed an ad in the local paper that stated “Experienced female PCA/Amherst. Call Deb: 549-4359.” It cost me $60 for two weeks, and was one of my better investments.

        It was tricky business dealing with the plethora of applicants. Some I was able to screen immediately when informed I was basically only looking for someone to do range of motion and, more importantly, to be a backup PCA. Some I didn’t call back because I couldn’t understand them or their voices were so weak I knew I would not want to work with them. Some I didn’t call back because they were telling me what they were looking for in a manner that didn’t feel “warm and fuzzy.” Approximately 30 women called in the course of four days; out of them, I interviewed six.

        I was still sick when I was interviewing, and struggled with balancing my need to not exert myself too much, but also, as I always do when interviewing someone, I put them to task by doing necessary projects.

        In spite of the sign on the door saying to come and announce yourself, Barbara rang the doorbell and wouldn’t come in until I answered it.  She was half an hour early, had no car, and was asked to hang her coat in the walkway, which, like her, smelled like cigarette smoke. Barbara talked about all the people she had worked with  (some of whom died on her watch) while giving me a perfectly inadequate “bath” with a washcloth in my wheelchair.” She meant well, but clearly had no idea that it was inappropriate to be a smoker and apply to work with someone like me.

        Heather had no experience, but was “board-certified.” She spoke like a computer robot, had a blood thinning disorder, and clearly had experience spending time in the hospital. When asked when she last worked there was a pregnant pause. She took an inordinate amount of time washing the blender and glass. She was very curious about putting something in a baggie and labeling it. When I asked her to do some range of motion and guided her accordingly, I saw/felt her come alive and into an element that put her on the “maybe list.”

        Jane is 78 and wanted $200 a week in cash under the table. Had I known that ahead of time, I wouldn’t have interviewed her. She came in the door talking about herself and didn’t stop! Having interviewed people for over 30 years, and having a desperate need to hire someone while simultaneously healing, I bordered on being rude. “I’m sure you’ve lived quite a fascinating life, Jane, but I don’t think you realize how sick I really am. I need you to answer my questions, if you don’t mind.” She didn’t listen. I used body language to get her to the front door and shook my head after she left.

        Margo was clearly a smoker. She also had no common sense, and had to be literally on top of the apartment with my guiding her before she “got” that she was in the right place. This time, the pig pen of smoke that followed her in the front door lead me to a verbal acknowledgment that she was a smoker and that it wasn’t going to work. “Sorry.” She didn’t even get her coat off.

        It was love at first sight when Mahogany arrived. Big black mama who I knew, when speaking to her on the phone, was a keeper. She clearly cared. Unfortunately, in my postoperative weakened and feverish state, she was getting a picture of me needing her to spend the night, which she offered to do.  I enjoyed her so much, but wasn’t ready to receive what she was offering, and sent her home with hopes that we could find a way to work together in spite of her not having a car and being rather obese

        I called Mahogany the next day to check in. When I found out she had taken the bus here from Northampton, gotten lost, had one of her four children help her find me, and on the other end of the interview, taken the wrong bus back to Northampton and wasn’t home until 10 PM that night, it was clear to me that as much as I liked her, it wouldn’t work out In the long run.

        Laura was my “11^th hour” match! Although she too got lost, she resonated with who I am, “spoke my language”, was open to being a backup PCA, learning the range of motion I like to receive, and had worked with one person for 22 years,  That she was also a hairdresser was almost too good to be true.  She came in the next day and learned how to do a few of the PCA jobs and to meet Jackie. YES!

        I pulled the ad, but not before returning many calls to inform people that the position had been filled. I never did get out the hard copy “form” typically used to interview people. I did remember to ask questions about their health, and I did feel them. If they felt to me, too, I can be with them.

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