What A Decade of Loss Taught Me

This is me 10 years ago.

Yesterday was 2.5 years since that left foot was cut off along with that ankle and part of my calf. When I saw this picture, I cried an honest to goodness cry about it, too, for probably the first time ever. It was the kind where you could swear your heart is breaking in your chest and your body wraps around it as if to protect it even though it is futile because you can’t make that physical pain stop.

I didn’t get to have a quick sudden death of my life as I knew it, like some people who have accidents or sudden onset illnesses. Those people get to look at their life and see a single day where everything changed, like the death of a loved one. There is a short time on which they can look back and mourn. They can remember the days before that one and the days after and see the difference between then and now; they get to mourn that day and those changes because people will look at them and validate their experiences because we all know what it is like when a tragedy strikes. But that wasn’t my experience because my loss took the greater part of a decade.

My experience was going from looking like that, carefree and healthy, to laying on the bathroom floor screaming in agony all night, unless I happened to pass out from pain or utter exhaustion, while my leg slowly suffocated and rotted from the inside out over the course of 3 years and while still holding a full time job, maintaining a relationship, and trying to be an upstanding citizen and community member. There was no medication that would stop the pain because there isn’t medication that can stop your nerves from feeling a part of your body dying. My foot would get close to death, then recover some, before becoming mostly dead again in a cycle that seemed endless.

There was no time during this period to mourn the loss of my health. It was a gradual and painful end that took bits of me away.

No longer being able to wear high heels all day.

No longer being able to dance in pointe shoes.

No longer being able to stand for long periods of time. 

No longer being able to wear heels at all.

No longer being able to dance.

No longer being able to wear real shoes.

Having to wear compression garments to keep the swelling in all my limbs at bay.

Having to use mobility aids to be able to go do anything.

Then the amputation happened and it was followed by my leg beginning to rot and fester with multiple antibiotic resistant infections that resulted in a revision (shortening) of my amputation accompanied by even more antibiotic resistant infections. If I’m completely honest, I haven’t been well enough to actually stop and mourn until recently because I’ve devoted all my emotional collateral and energy to seeking my mental, physical, and emotional health except that I haven’t felt grief over the things I have lost.

I had to ask myself why I was not grieving.

The complete answer is far more complicated and personal then I will share here, but it comes to this:

We live in a society where two very toxic dynamics are accepted as normal and justifiable:

The minimization of other people’s experiences, emotions, grief, or pain because we have decided ours or someone else’s is worse, which also has lent itself to the growth of inspiration porn.

The expectation that healing is linear and grief should be brief and hidden from view.

The first time someone minimized my feelings about my amputation was when I was told that I’m not a real amputee.

The last time someone minimized my feelings about it was yesterday when I showed another amputee I know that picture of me from before and said that I was sad and missed it. It was in regard to the 10 year challenge people have been doing on social media. I’ve met a hundred amputees are this point and this person was like all the rest. This person has shown pictures of themselves from before their accident. I’ve listened to the stories. I haven’t silenced them. I haven’t told them that my tragedy is is bigger, yet my pain, my losses, and my grief were dismissed because I have one full leg still.

I realize that there is a certain degree of individual personal loss or experience that may be a part of such dismissals. After all, we are all in our own place of healing and therefore cannot expect to all be as ready or open to feeling or addressing our emotions as others. One or both of those parties may have truly felt they were grounding me or reminding me of something positive. Nevertheless, the impact of those statements was not positive and they revealed brokenness within the speakers. This comparing of my loss to your loss, my pain to your pain, my trauma to your trauma as a means not of connecting but rather as a means of diminishing or dismissing has to stop. Each of our experiences is valid.

We all have the same needs as human beings for love, support, caring, and compassion, yet far too often we humans try to logic our way into saying something is better or worse, more valid or invalid, because we put some human construct on the values of experiences. The problem with trying to set a value scale for the experiences people have with emotion, trauma, tragedy, illness, and loss is that there is no true way to compare what each of us is experiencing and when we try to set a value scale on experience, we never are doing what we should be doing as human beings:

Showing kindness, compassion, empathy, and caring to our fellow human beings in need, including ourselves when we want to minimize our experiences compared to someone else’s.

All we accomplish when we try to minimize one another’s experiences or tell others that their pain is less than ours or less than some other person’s is invalidate the human experience and, in so doing, invalidate the human being. It can be something as innocuous as sharing a video of (frequently) an amputee doing something like running or rock climbing with some phrase “what’s your excuse?” or “I bet she can’t get any shares.”

So help me God, if someone ever uses a picture of me in that way, I will come so unglued and sue the socks off them for the unlicensed use of my image for such a dehumanizing experience.

I’m not your inspiration for walking or dancing or doing anything that isn’t actually inspirational. If you’re going to be inspired, be inspired by my words and my wisdom, by my sass, by my stubborn unwillingness to be defined by the flesh that is gone.

I neither want nor need your praise or sympathy for my amputation. If you want to praise me, praise me for bringing awareness to ableism and the lack of activism to address the gender inequalities that are so much more disparaging within the disabled community than they are in the rest of society yet that is never addressed with other women’s issues: the fact that disabled women in America are paid 55% less than their disabled male counterparts and that the unemployment rate among disabled women is 75%, which lends itself to the fact that one of the most poverty stricken populations in the US are disabled women and which is never spoken of by any candidate for office ever because the number of disabled women without jobs and those with them that get paid 55% less than their disabled male competition could never donate millions to anyone’s campaign.

I’m not some circus sideshow.  I’m not your entertainment. I’m not your kinky fantasy.

I’m a human being who is worthy of as much respect and kindness and courtesy as anyone else.

Part of that kindness we all are desperately in need of in our society is the permission to feel our feelings and to grieve and heal in our time, in our way. When it comes to the emotions and grief that come with illness, recovery, injury, tragedy, or loss, there isn’t a singularly simple and straightforward path from the onset to the end and we must stop expecting others to swallow their emotions. Feelings are not the enemy of happiness and health but failing to allow them to be felt is and we all need to be given the grace to have them.

I don’t just get to feel my feelings about the losses I have experienced…

I am SUPPOSED to feel them and to feel them deeply.

I am supposed to feel sadness about my leg. I am supposed to feel pain about it’s loss. I am supposed to feel grief about the things I lost in my life when I lost that leg. I am supposed to miss it and I am supposed to miss that foot and wearing those shoes too. I am supposed to miss wearing real pants because I cannot afford to buy new pants every time they are destroyed by a socket (which incidentally only takes about 2-3 hours of wear) so I will now spend the rest of my life wearing leggings. I am supposed to look at myself 10 years and all the health problems ago and say I’m sad for all the things I’ve lost. Having feelings does not mean I’m dwelling on it or being a victim, and it also doesn’t mean that I’m not thankful for the good things in my life like having one good leg.

My feelings and experiences are all valid and worthy regardless of your situation. My experiences are no less valid because in your eyes you deem your experiences as worse or because you can  find someone to point to that by your estimation is worse off than I am.

Honestly, if you actually care about another human being, whether it is because they have a place in your heart or because as another human being on this planet you ought to have some compassion, you don’t tell them to stuff their grief, that their loss or pain isn’t important or great enough, that what they are feeling or how they grieving is wrong, too long, or too short. Please do not mistake me: I’m not saying that unhealthy behaviors are acceptable, such as acoholism, drugs, abuse, and infidelity, but rather that having and feeling emotion isn’t just acceptable but healthy and necessary. Furthermore, if you’re grieving your losses or experiences as well, that should only serve to make you more compassionate, not less. Sadly, this isn’t what I see in our society as a whole.

If you take a vase and break it into a hundred pieces, you can put it together again but you won’t take away the cracks and there will be slivers that are lost or ground to dust. The Japanese art of kintsukuroi, where what was broken is mended with gold because the brokenness doesn’t make it without value or beauty but rather lends it greater beauty, is closely linked with philosophical ideal called wabi-sabi, where the flawed and imperfect are embraced.

This idea that we, as complex physical, emotional, and spiritual beings who have experienced far more than simply being dropped on the floor or knocked off a shelf should come out of our struggles without any scars is ludicrous. 

If you have a surgery to put something in your body back together, no matter how great a plastic surgeon is, there will still be scars. Just because so many of our injuries aren’t visible doesn’t mean we do not or should not have scars and pain from them.

We have to stop punishing ourselves and one other for being broken.

We have to learn to accept that we are not the same as we were before our difficulties and that we never will be… And that is not just okay but to be accepted.

We aren’t less because of what was broken but rather we have the potential to be so much more because consider what good we can do for those who are coming up behind us if we will learn to quit hiding our brokenness and the wisdom that comes with it but instead share it.

Recovering from challenges in life isn’t a sprint, it is a marathon, and if we don’t take the time to make sure we are well and healing, if we don’t take the time to grieve and mindfully seek growth as human beings, we can far too easily end up in another similarly challenging situation.

We are worth better than all of that!

We get to take time!

We get to heal and we get to have our scars and let them show so we can help the young ones who are just getting started in this life, which we cannot do if we are trying to convince everyone we didn’t get hurt and don’t struggle or have challenges.

There is nothing wrong with being beautifully broken and shattered and then put back together again, and there is nothing wrong with owning and experiencing the myriad of complex emotions that come with that brokenness.

*steps off soapbox… drops mic*