Like most people with disabilities, I struggle with the highs and lows of the roller coaster ride I am on. I want to enjoy life and not let things stop me. “Good for you,” strangers pointed out to me yesterday on a small trail in Trough Creek State Park. Yet today, when I tried to get out of bed, I couldn’t. I sat with tears in my eyes and talked to myself about how it could be worse, how I could be worse off, how others have it worse. I sobbed right through my whole inner-motivational-speech half hating the part of me that wouldn’t let me wallow. It is hard. My mom often points out to me that I am what she calls an in-between disabled person and that is one reason things are such a struggle for me. Yes, I am missing a limb and on crutches or in a wheelchair full time, but I am also able to do exceedingly well for someone in my situation. I am not content to sit back and let others take care of me, nor do I want to miss out on the adventures life sends my way. This predicament puts me in a unique niche as an in-between disabled person. Not helpless, not fully able. The price for partaking in life’s adventures often results in days like today where I am bedridden or bound to a wheelchair and unable to leave the house or mobilize myself at all.
And what of it? It is the low point of the emotional roller coaster of being disabled. If being able to climb the side of a mountain is a high point, the next four days of incapacitation will be the valley and pit of depression. In my mind it is so hard to reconcile the dissonance of the toggle, able/disabled, on a day to day or sometimes hour by hour basis. The emotional ride is exhausting and the irrationality of my reality can be costly. Yesterday, I could cook and serve a meal, take a short mountain hike, pack up everything from our trip, drive three hours home, pick up our pets, and carry my backpack of clothes in the house. Today, I cannot lift my tea kettle to pour myself a cup of tea. How can a person navigate these extremities on a daily basis without it taking a toll emotionally?
The first thought that I have, which many other disabled people share, is to simply stop doing things that are hard for me. I didn’t have to do the trek back to see the waterfall yesterday. I didn’t have to walk from the camper to the water several times with the children on Sunday, and I didn’t have to walk around the town of Bedford on Monday. If I hadn’t done those things, I would have maintained a relatively stable level of ability. But at what cost? What is the point of pushing through life without doing the things we don’t have to do? Should I have remained in the hotel room when others enjoyed the small town? Should I have been content only with pictures of the waterfall and sat in the car? Should I perhaps not follow the children and partake in their adventures but satisfy myself only in their stories of fun? The truth is relative in this situation. For me, I survived cancer to live and enjoy life and the fullness of it. Unfortunately, that means embracing these highs and lows along with it.
I am careful here not to produce scripture that I have turned to in these situations as a type of justification for my choice to be an active disabled person. As mentioned, the truth is relative in this situation and there is nothing in the bible that fully vests an interest in me being active and then unable to move because of it. The bible is full of encouragement for me as well as for those that choose to live in a more restrained manner . However, I feel one of my purposes on earth is to suffer well and be an inspiration to others through that suffering. It is not the case for everyone, and many would choose to play it safe and not push themselves to experience life at the expense of their body and comfort.
This particular morning, I sat skimming Facebook for a distraction through glassy, tear-filled eyes. I stumbled across one quote followed by another, the connection between the two was made by a wise friend:
Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. Helen Keller
Either you reach a higher point today, or you exercise your strength in order to be able to climb higher tomorrow. Friedrich Nietzsche
Personally, I am not sure how Nietzsche could make a statement like that in light of nihilism, but that isn’t the point of discussion here. The point is, I saw the principles in these two quotes, and embraced them. If anyone would know the ups and downs of disabled life and the emotional toll of it, wouldn’t Helen Keller? The excitement of learning and exploring as she was led about one day only to sit in the silence and darkness the very next, would certainly be taxing. Frustrating, to say the least. Yet, Helen maintained her inspiration and increased wisdom in all she did. I’m sure, no I’m positive, that she cried and had days like I have. But I love that it didn’t stop her either. She wasn’t content with allowing the world to be interpreted to her as others experienced things. Instead, she dove right in and chose to experience them herself.
Yes, living a fairly stable and mediocre life devoid of action or adventure would produce the most consistent and predictable outcome for me and my body. But will I truly grow, allow my soul to be strengthened, my ambition to be inspired, and my successes achieved by choosing such a modest lifestyle? Will I be content in knowing that I chose to not experience and embrace the fullness of the mountains God offers simply because I don’t want to embrace the valleys? The answer for me is a resounding no. I shall continue to push myself to reasonable limits, and enjoy the fullness of life. I’ll plan and enjoy one day at the expense of a few bad days; and I’ll abstain from things I truly want to do in order to save up my body for something I would love to do. One day, when I can no longer do these things and am stuck permanently in a wheelchair with limited ability, I will think back over my life and these memories. In that time, I am most certain that I will have more to reflect on than if I play it safe now while others partake in the adventures for me. Physical strife and emotional taxation are the price to be paid, and I am determined to pay it (within reason) while handling these trials and sufferings with the utmost integrity and honor.
Even bedridden today, I can experience and strengthen for tomorrow. I shall read and experience adventure through books, while healing my body to resume mobility. I may possibly play the piano and make music for the Lord to enjoy. If my hands hold up I can continue crocheting a blanket I plan to bless someone with. Writing via talk-to-text has already happened in this article today, and I can practice mindfulness and intercession as well. These down days will not be wasted days, no matter how low the valley I find myself in. All things are for the betterment of Christ’s purposes and I only hope to continue living up to that in the years to come.