When Hope Fails...

​​Sometimes hope fails. There comes a time when the weight of life and the truth of reality become too heavy to carry. Even the heartiest of hope seekers can reach a point when they have to take off their battle amour, lie down and admit they are defeated. But it’s a lot easier to pretend you are strong than it is to admit your weaknesses. As a rule, being honest about the depths of our struggles makes those around us feel very uncomfortable. “You can do this” or “You’ve got this” may be said with the best of intentions, but truthfully, like many things, it is impossible to sustain. 

Take sleep for an example. We all have to sleep. It is a crucial part of how our bodies function most effectively. We can push our limits and sometimes stay awake for long periods of time, but we simply cannot function indefinitely without sleep. The longer the time without sleep, the more the body systems cease to function as they are intended. The same is true with holding a burden. Holding a 5 lb weight is easy. That is, if you don’t have to hold it for a long time. But try keeping your arms extended with that 5 pound weight for 5, 10, 15 minutes and it begins to feel heavier. The actual weight has not changed, but the length of the time you have to carry it eventually causes it to become unbearable.

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​It is no different with events in our lives. A single event may at first seem light, but over time, holding up under the weight of its can cause us to crumble under its increasing pressure.

This is made even more pronounced when what we are carrying, slowly increases in weight. How many times have I done that at the grocery store? I go into a store and am just planning on getting a couple things, so I grab one of the little baskets by the door. Soon, I find something else to add, and something else, and before I know it, my arm is screaming from the pain of trying to carry this small basket overflowing with now heavy items. ​​

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This summer has been that for me. Inwardly screaming from the pain of carrying the weights I am carrying and finding more and more piled on top. When it got too hard to fake a smile, I just got quiet. I watched the light fade from my eyes, and yet was helpless to stop it, wishing instead I could just dissolve into the breeze the way the essence of who I am has been swallowed up by life.

It’s not something I’m proud of. I’m supposed to be the lady with hope. I strive to make the best of life’s unpleasant circumstances. And I did, until the basket I was carrying got too heavy to bear.
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The summer began with the tremendous joy of reunited family, but it came at a high price. The realization that time is not on my dad’s side, brought us all together, but with it came the weight of grief. Seeing time and illness steal away the dad I have known was not unexpected, and yet still a sucker punch to the gut. The circumstances that came with that reality became the 5 lb weight.

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​Then you add to it the realization that somehow, without knowing it, you have lost the person you used to be. The things that used to bring me joy are no longer there. My own illness has slowly stripped away my identity as a teacher, a performer, and ripped my dream job/business from my hands as I sold my house and packed my children’s museum into crates and boxes.

​It has shifted people and friends beyond my arms reach as my energy levels, abilities and perceived obligations steal the time and effort so crucial to maintaining healthy relationships. The weight of this loss settled over me like a heavy blanket robbing even more of me, as my writing, enthusiasm, and hope all slipped away from my hands, too tired and defeated to keep holding on.

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And then, as an insult to injury came the moment I realized my body had taken a hit. When my brother was here is the beginning of July, he said to me, “You look like you are really walking a lot better”. I responded, “Yeah, I really think so too, but I don’t want to say it out loud, because I don’t want to jinx it”. But it was too late. The words swirled around in the air and headed off into the atmosphere to fall down like rain in later weeks as I suddenly realized my legs no longer wanted to behave.
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I have not handled that well. My doctor that I loved, who had been with me since one month after I first got sick is now in NYC at Columbia University learning more about epilepsy. He will be a tremendous gift to that community, but his absence leaves a hole in my life that I’m not sure can be filled. A miserable ER experience when I finally acknowledged my decline mid July sent me to sleep in my car at 2:30 in the morning outside of where Meg was being boarded, because there was a “miscommunication” between the ER neuro and the attending doctor. So, instead of being admitted, I drove back and forth to Lebanon for 4 days. Yeah, that was helpful…..NOT. (Though he tries to pretend otherwise, the attending doc is NOT my biggest fan. He doesn’t take kindly to me doing my own research or asking questions, or in my taking an active role in my condition and treatment. Sorry dude, that is highly unlikely to change!)​

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You would think I would have taken a deep breath and faced this latest setback head on like I had every other time before, but I didn’t. It had been over a year since my last relapse. I had finally begun the treatment that was supposed to keep me from new relapses. I had slowly, but surely gone from a wheelchair, to walker, to canes, to actually walking in the field at my parents unaided. OK, it wasn’t pretty, and my built-in balancing “wings” were often seen flying, but still, I could do it. Now I had lost about 50% of those gains in just a few short days.

​For the first time since after the birth of my son almost 3 decades ago, I felt the blanket of depression take hold with a grip I could not shake. The decline of my dad, and all that came with it, plus the loss of my legs and the loss of all the things that brought me joy ate away at my soul. The silence was deafening and the empty was everywhere.

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When your cup only pours out and never fills up, it is not sustainable. Through the encouragement from my cousin and his wife, both doctors visiting from California this summer, my parents are finally starting to receive some of the long overdue services they have needed. Now, I am trying to allow for the same for myself.
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I don’t have it all figured out, but I have at least started to think it about it. I know I need to feel useful again. I need to find a way to find a way to find joy. I need to find a place where I can feel included and wanted for who I am and as I am. I had accepted my body and its limitations once before, and was determined to rise above it to maintain who I was. But somewhere between the disappointment of going backwards again and the pain of losing myself in the weight of my day to day life, I found myself back at the beginning again. I’m embarrassed by my limitations, feeling awkward and out of place, and searching for meaning and value. It’s like I have to go through the whole grief and acceptance process all over again, and I don’t want to. It feels too hard.

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​​It wasn’t until I was cleaning up in the camper that I realized life was imitating art. Above my bed in Pemberley (my camper), I had created a picture of uplifting words intended to encourage and inspire me. But on this day, I realized something was missing. I was literally missing my JOY. At some point it had pulled away from the wall and has yet to be found. I am seriously considering turning the bed upside down to try to find it, and if I don’t find it I might try to recreate it. Maybe if I can put the word above my head again, I can find it again within me.

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And just when I fear I may not be capable of ever feeling joy again, as if my joy receptors have been permanently damaged like my legs, I felt a flicker. 

​There is a plant on my parent’s deck. It is a spider plant that has been here at my parent’s house in some shape or form for decades. It was the only plant of the ones brought in from the porch last fall to survive the winter. It was not because of the cold, but because it was inside and ignored. It wasn’t watered or given adequate light (when I wasn’t here). But somehow it managed to survive despite the neglect. Anyone else would have thrown it away for dead. But I saw a hint of green among the dead leaves. I made it my mission to nurture that sweet little hint of green to grow again, and it did. When I first put it out on the porch, I confess I was a tad embarrassed. It was a tiny sprig of plant that stuck up in a large hanging basket. But I believed it would grow. If it had made it through the winter in those hostile conditions, I was convinced it would thrive again if given the right circumstances.
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It took time. It didn’t flourish overnight, but it did continue to grow. Walking out on the porch recently, I looked at that plant. It still hasn’t grown the familiar shoots that hang below and give it its name, but it has grown to fill the basket. In that moment of seeing it so healthy and full, I felt a ping of joy shoot through me. And that little moment of joy gave me a moment of hope. I had nurtured that tiny, neglected plant that most would have given up for dead. If I could do that for a wee plant, I could do it for myself. I had saved the plant, and yet, it had offered me a special lesson and hope that will hopefully save me.
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The emptiness is far from gone. But the memory of the glimmer of a real smile gives me hope that there are more moments within waiting to be found. I just need to do the same for myself as I did for the spider plant. I know it will not happen overnight, but hopefully, if I can find the right circumstances for myself, I too can flourish again. Here’s to figuring out what those things are and having the strength and determination to make them happen. 

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​Update #1
 
I had the chance to see friends recently that I hadn’t seen since shortly after my big relapse in May 2018 which sent me to rehab learning to walk again. They were super impressed with my walking. My response was, “You should have seen me a month ago…” :/ But they reminded me how far even this was compared to that previous visit. “If you go two steps forward and one step back, you are still making progress”. Perspective….

​​Update #2
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I found my JOY. Literally. I glanced over at a pillow I have moved a hundred times since it went missing from my wall. There it was, just sitting on top of the pillow, as if it had been there all along. It was a little wrinkled, but still intact. I stared at it a long time. As I looked at it, both my fur babies sat and looked at me and smiled, as if they knew something special had happened. They reminded me they are always by my side, bringing me joy. That is a blessing that has not gone unnoticed. I can’t even dare to think where I would be were they not at my side. Gratitude.

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Speaking of gratitude, a gal I’m friends with on FB recently shared one of those tests that is supposed to tell you about yourself. It was a word search filled with letters and we were to state the first three words we saw. That, according to the post, was our reality. My three words were Purpose, Gratitude, and Connection. As FB tests go, it was pretty darn accurate. I am searching for purpose and connection, while trying to remain grateful for the things I do have. I am still trying to figure out how to do that and what it looks like practically, but I think I have myself convinced it’s ok to try. 

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Update #3
A friend asked me the day I finished writing this about how I was doing. I sent her the link to this even though I hadn't put it out there yet. As we talked I realized that the circumstances after my son's birth were very similar to the ones I am in now. When you lose your control over so many areas of  your life, it's easy to fall into despair, especially if it is for long periods of time. Add to it a lack of resources, and suddenly it's easy to see how people can get trapped in a downward spiral and lose hope. Somehow, seeing the similarities between the two dark times gave me a big jolt of hope. It helped me to understand. It was like acknowledging my Achilles heel somehow gave me power over it. Power is good. 

Update #4
The inner workings of MS don't really care if you are fighting hard to regain control of  your life. It has the final say because it ultimately has control over my body. During my relapses, the areas affected by my original Transverse Myelitis return to their states of dysfunction. For me that was from the waist down. The obvious impact is to my legs, but there are a lot of organs inside that are also impacted. That includes my bladder, which is struggling to do it's job effectively. That results in an infection that I don't realize until the symptoms spread to other areas of my body. I'm keeping my fingers crossed that the oral antibiotics do the job so I don't have to head back to the hospital for something stronger. But even if MS and TM control my body, I am determined to take back my life and my strength to face whatever lies ahead with grace.

Update #5
I decided to add the picture of the word search in case anyone reading this wanted to try it themselves. After I got it inserted, I decided to try it again. This time I saw Power, Breakthrough and Strength. I'll take it!