This blog was a process. A process by definition is a “series” of actions or thoughts before coming to conclusion. I wrote this because:
1) We all have to face “experts” who for the most part are making decisions they believe are in our best interest. Sometimes we have to disagree with them and choose our own way.
2) I use to think it would be easy to let go of something if my life and well being might be in the balance. I can say that isn’t true. My reactions took me by surprise.
3) I’m pretty sure people will have a relatable experience who won’t write or speak about it.
I never really expect to go backwards. To be honest, when I wrote about losing my healthy status I knew there would be more losses. I never thought the ONE loss I regained, walking and standing, might be challenged.
Last spring I started walking again. My latest physical therapist helped me acquire my balance and alignment. Then she got me standing and walking for up ten minutes. It was the best thing that has happened to my physical body in a very long time. I’m not sure that I can fully communicate the ecstasy of more mobility. I still use my wheelchair in combination with my newly found self mobility. Being on my feet feels like freedom. While my herniated discs and nerve damage still cause pain, it was lessening. After more than a decade of only going to doctor appointments, tests and hospitals, I began going out with my husband and friends on weekends for drives, for stops in parks, going to women’s circles and realizing that I could create a life outside of the walls of my home.
It really wasn’t a big deal when it happened last Friday. I had a “fall”. People have them everyday. You can lose your footing, your balance, your bone strength, and down you go. It was my left knee that really hurt even though bruising was on my back and left thigh. That knee was the point of first impact and a clue, because it wasn’t a fall.
I’ve had many “drop attacks” since I was child. They are always unexpected and unsettling. Normally a “drop attack” is a “crumple” where I simply fall down, usually to my knees. My wrists, elbows or head takes the second impact. In my history, some have occurred when I was in motion. One was while climbing stairs. The attack brought me down backwards landing me on gravel. I remain conscious throughout the process.
Information on drop attacks is something of a hot mess. Some say if a drop attacks causes injury, it is to the knees, elbows, wrists, face and on a rare occasion to the head or neck. I’ve had worse. In part or in combination they may be a sudden loss of balance, muscle control, a seizure or a misfiring of the signals in the brain or nervous system. While I have heard some definitive explanations for them, others completely disagree. My conclusion…..nobody really knows.
I have an internal sequence of sensory information that always gives me a brief second to know when a “drop” is happening. In my body I hear the softly spoken words “going down”, “falling”. I usually say “falling” out loud as well. The outside world becomes frozen, yet crystal clear. It is brighter than normal. My internal world becomes excruciatingly slow. Movement feels like I am going through mud. I always open my hands to release anything I am holding to prevent additional injury. My husband and I worked out his role years ago. He has to do his best to defy his natural reflex to help me. Usually he backs away. If he doesn’t move away, he could be pulled down with me, either under or on top of me, causing additional injury to me and him. I have tried using a walker in the past. It unfortunately has gone down with me as well, so the decision for me to be wheelchair bound , was in small part, to stop the drops. At that time it was mentioned in passing. The car accident, herniated discs and nerve damage played the main role for my being in a wheelchair.
I saw the neurologist today, he wanted me to explain my “fall” in detail. I realized that I had not even considered the possibility of a drop attack. It’s just been so long since I’ve had one, I didn’t pay attention. As I finished my recount of Friday’s event, I found myself suddenly and rather quietly saying “Damn It. It was a drop attack.” It was a forward motion one. I was leaning forward on a hay bale with a sea of gourds covering most of the ground. There were only small spots of ground for me to have stepped down to. My husband had held onto my left arm because while I opened my hands, I never uttered “falling”, the code to let go. It made the drop slightly twisted and caused some different impact that made it seem like a fall. Both the doctor and I am sure that it was a drop attack. When I locked eyes with the doctor I knew what he was going to say and chart. It would be very difficult for him, irresponsible, to suggest anything other than my returning to my wheelchair for my mobility. Between the chance for more drop attacks and my blood pressure drops from my carcinoid syndrome which has caused me to pass out, walking and standing can be a very iffy proposition for me. Possibly, I could use protective gear. I would need to alter the exercises that have helped me acquire mobility. The physical therapist would have to change my program. Maybe, further down the road, limited walking would be possible. I was staring out the office window, with silent tears streaming down my face.
It is strange how many times I have dealt with much worse news about my health, being told things that are serious threats to my very life. My normal response is to acknowledge it and move on. Sometimes, it is delivered in less than appropriate ways, usually by one of the many doctors “helping me” with my cancer ( NET Carcinoids) or my carcinoid syndrome. Still, this was the news that brought me to full weeping. The only words in my head, kept repeating, “I can walk, I don’t want to stop.” It felt like someone had run a knife through my heart, leaving it there to just keep the wound open and bleeding. Standing and walking were THE things I was sure could not be taken away again. I was not handling this news well. I left the appointment feeling despair, something I had not allowed to enter my being before today.
It’s also the season of autumn. It is interesting to me, at least on this day, that we call it fall. Stark and harsh reality are more keenly felt. The crone, hag and wise woman that walks with me at all times, stands before me during this, her time. She, like the many strong and powerful old women of my childhood, sugar coats nothing. Today was no different. I also forget that like those women, she can encircle my waist with her arms, winding through me a dose of a grandmother’s encouragement.
“Don’t be small and don’t be a fool. Cry and keep crying until the tears are done. Take some time away from everything for a few days. This is going to be a process, with setbacks. This is the first drop attack you have had in a very long time. Take precautions, take it slow, take it very easy, and take away this decision from him. So…..it isn’t completely safe to walk. Nothing is 100% safe. So far, it’s just one bone bruise. Living in fear has never been like you. A doctor had recently told you that your heart was damaged and that you could die at any moment. You decided to go on. You come from women who have lived through terrible tragedies and harsh times. Many lived with all kinds of broken bones and broken lives. They grieved, they wailed, they wrapped them to heal and then went on. You stand on their shoulders and they live in you. So, in time, crawl, use wheels, walk or run, but go on.”
I could say the wind touched my forehead. In truth, she kissed me.
I am still upset. I am still crying. I am taking time off. I will work this out. My heart will catch up with my head.
I could have ended my blog there. I was going to. It’s been a couple of days. I had several conversations with my husband. As always, he is in my corner. I had conversations with women I both trust and love. The crone’s words made their way through me and my heart fully caught up. I remembered to not make any final decisions in the middle of a process. I also was reminded of the many things I have that are not dependent on my physical condition.
I got injured. I have been injured many times. Like most, it will heal. The drop attack could have just been on the hay bale if I had stopped when I first felt “off” and had stepped back against the tree instead of moving forward. Going slower, some protective padding at times, stay off heights, and several other changes could allow me limited walking and standing time. Don’t think for a moment that I don’t know the possible seriousness of these attacks, especially in combination with my carcinoid syndrome. This isn’t carefree, or a devil may care attitude. I have to be very careful. Even in my healthier days I have fractured bones and joints from a drop on a marble or concrete floor. I have had deep cuts needing stitches and doctors if while dropping I caught a sharp edge of a table or landed on a sharp object. Many people do not end up in wheelchairs even with those risks and outcomes. While I will make my standing and walking more limited and selective, I won’t give it up.
I called the doctor and told him what I decided. I said he should reconsider. He paused for several minutes. He asked me to let him run all the MRI’s. Barring any major problem, he would alter his recommendation and agree to a slowed and selected walking with many precautions. I wanted the physical therapist to do an independent evaluation and recommend a program. Again, he did agree. This particular doctor has been with me for almost twenty years because he is both willing to listen and always reminds me that I am the final arbitrator for any decision regarding my health.
My life will have a few new self-imposed physical restrictions. My diseases will not yield to me all the physical possibilities I would like. By the same token, I will also have self imposed permission for more freedom for my art, mind, writing, and especially my relationships. In case you missed my post on making friends online, many of those relationships are with you, my friends online. I am wrapping up my injury. It’s time to go on.
Blessings to all,