Some time ago, due to my back problems, I consulted a neurologist. A good way to start the conversation had always been the comparison between GD and BID. He already knew about BID, did not question it in any way, and at the same time emphasized: “Of course it exists.” He accepted BID without trying to take away my aids or deny BID. The conversation was neither interrupted nor dismissed – on the contrary: it was open and respectful.
He mentioned that matters such as an amputation would have to be reviewed by ethics committees. After briefly looking through the latest studies, however, he admitted he was at a loss and explained that we were in good hands with the scientists, since he himself could not make a well-founded statement. He then asked me directly whether I wanted a leg amputation, and I showed him the exact spot.
During the examination he patiently waited until I had removed my orthosis so that the nerves could be measured again. A slight paralysis in the right lower leg and some muscle weakness still remain. I was able to leave him the studies and information about BID for reference and for a preliminary conclusion, which he was very pleased about.
Because of my persistent pain, I also hope for relief through a wheelchair, so that I can leave the house more easily. The slight paralysis in the lower leg will probably remain, but we were both very satisfied with the results so far. Perhaps multiple segmental fusions of the spine in the cervical and lumbar regions of the affected area can be avoided in the long term. We will try everything. I am now definitely supposed to involve a pain specialist.
Mild spasticity and various sensory disturbances from head to toe still persist. When all four limbs from the neck down are affected, it feels completely different – it was a terrible time. It was clearly too much and not my BID. Patience with the right medication has proven to be the right way for me, even though it still often goes along with pain and smaller limitations will probably remain.
The neurologist will now send a detailed report to my family doctor. If I receive a wheelchair, I wonder whether it could also help me with BID. If the leg were gone, I would need one anyway. We both found this thought interesting, even though I am not sure about the success and am not really enthusiastic about a wheelchair in relation to my individual BID. For me it is merely an aid for longer distances.
Once a prescription mentioning BID, a note in a report – and over the years quite a few things came together in the search for a solution and help. I no longer wanted to hide BID or gloss it over with excuses. In the long run that was the right decision for me, even though it was often painful and left me saddened for weeks. I experienced everything imaginable during that time. BID, the amputation, simply belongs to me and I still cannot explain it today. “It hurts here or there” is not true – it hurts deeply inside, because it creates a permanent felt inconsistency. Period.
To support my approach, expert opinions with official recognition proved helpful over many years. This allowed me to pursue the matter more officially. The older reports still used the abbreviation BIID, while the newer ones used BID. For me, BID is a constant. Even another or greater disability does not really dissolve BID, although concern about it sometimes overshadows it. Not always, but sometimes.
But when I had to stay in bed, BID also led to several dysphorias and to the feeling that my approaches had failed. I asked myself very often: If nothing works anymore anyway, couldn’t they just saw off the leg – then at least I would have some joy. The fact is: the danger seems to be averted for the time being, but BID remains. That’s just how it is.
I was treated very well and never felt like a curiosity during any of the examinations. It was always dignified.
