Yes, I had my first wheelchair experience in April at Mt. Sinai
In June, I had another, also at Mt. Sinai.
I was going in for my second round of Rituxin. Mentally, I was in much better shape. I knew what to expect and did not anticipate the treatment would result in death. In fact, I was looking forward to it, as this time I had a plan. I was working, it was summer and I was going to go to the gym and pump that stuff through my system.
I had a later appointment but we went in earlier in the hopes I could be squeezed in early. Despite working, I had been walking less so I was fatigued when we came off the bus. Plus, I was naturally nervous and that impacts my walking as well. We staggered into the hospital. The security guard came bounding over, asking if I wanted a wheelchair. No, they have a great ramp to the elevators. Then we walked the labyrinth to the treatment center. It looked different. T went to check me in as I sank into a chair. A male nurse came over offering a chair. I explained I didn’t need one to stagger the last few feet to lay down for 6 hours. I heard loud voices. Apparently, the treatment center had moved to another location, a couple of blocks away. T was demanding a chair at the same time the nurse was telling me that’s what we needed. In April, I was put in a chair for speeds sake and whisked along underground passages. This time it was outside sidewalks in NYC. I became this little old diminished lady in a wheelchair. No selfies. It was bumpy and I felt less than. Less than the full person I believe I am. People were looking over my head or avoiding looking at me. Ok, maybe it was in my mind. And yes, at that point I would really have had to struggle. The pavement was bumpy, tilted and crowded.
The elevator was horrible. Again, it must have been me but people were too kind and considerate. Everyone loomed over me and I felt tinier and tinier.
When we got to the right floor, T handled just about everything. It was, as if I wasn’t competent. I felt very, very small.
I was even wheeled to the waiting room. I hated feeling diminished.
The treatment moved forward and I was able to walk well to the bus and through the station. I had problems and continue to do so on the station stairs.
This is not going to be one of those cheery and then I overcame or realized what a blessing.
What I realized was unless I get better that I cannot work in NYC. This is huge as that’s where the money and the opportunity is. I see things that I want to do and my pre-condition brain says “what fun. Let’s do that.” And then I realize not happening!
When I was first diagnosed, for one brief moment, I thought I was going to be a poster child. I would learn all there was to learn and just be. First thing I received was a brochure with a woman on a scooter. I turned off immediately. I wanted no part and still want no part of that type of acceptance. The spectral leg, the cane have all set me back and pained me deeply. They are physical representations of my limitations. I have to accept them, for now. But now is becoming an infinity.
True confession: I was in DollarTree last week. It was early in the morning and I should have been at the peak of my energy level. Plus, give me a cart and I usually rock. This leads me to the walker that I ordered in January that stays behind the den door. Anyhow, I was destroyed. I could barely walk. For a brief moment, I wanted a motorized cart. I couldn’t believe me!
Everything is not all good all the time.
I am happy to say I am still fighting as hard as it is becoming. Some days, it seems insurmountable. I hate being confined to my body. Guess, I need to work on that spirit thing.
Oh, and by the way, my doctor said she noticed a spiritual change in me. She has me confused with someone else. There is nothing grateful or spiritual about this!
End of pity party, for now.