- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
There is an excellent thread on losses in the CALS sub-forum:
Losses
I thought I would start an analogous thread here in the PALS sub-forum. Our experience is personal and parallel to the CALS’ experience. It is happening to our bodies, day by day. We have to continually attempt to adapt, both in how we do things as well as in attitude. I’m hoping other PALS will chime in and share their opinions and experiences.
I think of people with cancer who mourn the loss of a breast, a limb, or a lung. Our losses are functional. Our body parts remain intact. Muscles just quit functioning, one by one. The loss of function is continual, additive, and progressive. It won’t leave us alone. We go to sleep, and it is there the next morning, perhaps even worse. We try to adapt, but then we have to re-adapt with each loss. There’s the BiPAP, the wheelchair, the grab bars, the commode chair, the urinal, the diaper, the hoist, the feeding tube, the speech generating device. The list goes on and on. It seems endless. Is this really happening to me? Sometimes it seems almost easier to become numb to the situation because the reality is so overwhelming.
Five years ago, if someone would have told me that towards the end of 2019 I’d be non-ambulatory, depending on a power wheelchair, needing others to help me with dressing, bathing, and toileting, receiving nutrition through a feeding tube, and unable to speak clearly, I would have asked to be relieved of my life swiftly. Yet here I am, trying to adapt to what I still have, trying to make sense of an impossible situation.
I am lucky to have a supportive partner, but I know this is wearing on her. I hate that this disease has dragged us both into it. I hate being so dependent.
Losses
I thought I would start an analogous thread here in the PALS sub-forum. Our experience is personal and parallel to the CALS’ experience. It is happening to our bodies, day by day. We have to continually attempt to adapt, both in how we do things as well as in attitude. I’m hoping other PALS will chime in and share their opinions and experiences.
I think of people with cancer who mourn the loss of a breast, a limb, or a lung. Our losses are functional. Our body parts remain intact. Muscles just quit functioning, one by one. The loss of function is continual, additive, and progressive. It won’t leave us alone. We go to sleep, and it is there the next morning, perhaps even worse. We try to adapt, but then we have to re-adapt with each loss. There’s the BiPAP, the wheelchair, the grab bars, the commode chair, the urinal, the diaper, the hoist, the feeding tube, the speech generating device. The list goes on and on. It seems endless. Is this really happening to me? Sometimes it seems almost easier to become numb to the situation because the reality is so overwhelming.
Five years ago, if someone would have told me that towards the end of 2019 I’d be non-ambulatory, depending on a power wheelchair, needing others to help me with dressing, bathing, and toileting, receiving nutrition through a feeding tube, and unable to speak clearly, I would have asked to be relieved of my life swiftly. Yet here I am, trying to adapt to what I still have, trying to make sense of an impossible situation.
I am lucky to have a supportive partner, but I know this is wearing on her. I hate that this disease has dragged us both into it. I hate being so dependent.