It's crazy how perspective changes. Years ago, a close friend was paralyzed, another killed, and a few others injured headed to Warm Springs, Nevada on a school day. I was supposed to be in that car, but last minute decided to go to school and take a math test. Hours later I was at my friend's bedside. He was stable, coherent, and understandably choked up. We were 17. He told us about hearing his spine snap, how glad he was that he was alive, and how scared he was of the future. Then he promised he'd walk again.
A year later he was still in rehab, learning to take care of himself without the use of his legs. He was distraught, angry, and not at all doing well mentally. It appeared he had started drinking, and I was worried he was on drugs in order to deal with the physical and mental pain he was in everyday. Jimmy never accepted what was happening while I knew him. It was hard to watch, and as time went on, became too much. He was self destructing, and I couldn't stomach it. I stopped visiting and contacting him, and lost touch. That was 22 years ago.
As a motivational speaker, many of my friends are determined individuals who were able to overcome major obstacles, and incredible odds. A few have even been paralyzed, but made their way out of wheelchairs and terminal diagnoses. Then there are those who are pushing through graduate school with crippling illnesses and failing health or major family stress. They all make it look easy. They make it look like anyone could do it. When you spend your time with people like this, it's easy to feel a need to achieve, and like there is never a good excuse to give up on a dream or goal. Throw in a hefty dose of personal aspiration, and there you have my unquenchable determination and insane fortitude.
The trouble is, I didn't start out healthy, and there was no accident. My genetic code makes defective collagen, and my ligaments, skin, and blood pressure don't work right. They never have. Maybe these same genetic anomalies are putting my organs and veins at risk of rupture the next time I fall down stairs, or slip on the ice. Unfortunately, we don't know yet, and insurance hasn't approved the test that can tell me. Still hopeful they will. In the meantime; no cure, no way to really slow what is happening, no way to know exactly how this will go down. Just symptom masking, protective gear (let's call it my superhero exoskeleton), and hope. Make no mistake, hope is huge. And there is a very real aging process at work. I can strengthen muscles, but I can't make the ligaments hold them up. I can protect my energy, while salt and fluid loading, but I can't change the unknowns that make my blood pressure plummet for no discernible reason. I can wear medical alert jewelry, but not control if the Emergency Department nurse dislocates a major joint on accident while trying to help me. I can be thankful I'm safe, and have a team of nurses and doctors around me, while knowing my joints and ligaments might be permanently damaged, because I don't heal from surgeries or torn muscles. And I can be brave 99 days out of 100. And...I'm not even 40 years old, and this is scary as hell. There is nothing I can do about whether or not I get hurt, and less I can do to heal the injuries. No amount of courage, positive self talk, or "not giving up" can change that.
I'm facing my own mortality, and sometimes worry the old, terrified me is going to sabotage everything. So I push harder than I should, and aim for the stars. Call it a coping mechanism. Moons are for rookies. I want Andromeda's sun, and I want it unfiltered. Forget about the heat. I think I'm invincible, or should be because other people seem to be.
Then I get too close and get burned. A smart person would back away, and consider not going too close again. I'm a very smart person...
This is not me surrendering, it's not me taking the easy road. It's sure as anything not rolling over and giving up. This is happening. I can plan to take over the world, run a marathon like I've always wanted, and be an internationally traveled speaker, stopping off in all the hottest spots to inspire, encourage, and rev up the next generation of world changers. However, there is a chance, no matter how bad I want it, no matter how hopeful, positive, or motivated I am, it's not all possible.
And...
And.
And, it's OK. This, my friends, is not fear. This is not giving up or giving in. This is what I am calling, "the other side of courage."
You see, sometimes, the bravest thing to do is be OK with what is, while learning to thrive inside of it. How many times have I recited the Serenity Prayer to keep me sane? So. Many. Times. Hundreds? Maybe thousands.
Courage. God, grant me Courage.
Can I have courage and still accept what is coming? Can I do it without others believing I'm a coward? Maybe. Maybe not. It's really not my problem what others think. I believe in me, I believe in God's plan for my family, and more than that, I believe in God. There are no coincidences. I don't need to hurt or worry over what others might be thinking. Let someone who isn't listening think I'm giving up. It just means they don't know me. It's none of my business, and out of my control what they think. And no one is living my life but me. Their judgement can rot their insides. It's not getting into mine. It can't be a shadow I fight, because there are too many shadows in life already. I'm not going there.
What if I was never meant to travel the world speaking? What if the plan for me is to stay close to home, and bring a little sunshine here? Then vascular EDS and POTS are a pretty clear-cut way to keep me grounded. If I cannot safely do something, how is it cowardice to not risk my life? Isn't courage doing something hard when we are scared, or would rather do something else? I'm scared, alright. Some days more than I'll admit. And I want to traipse around the world in style, sharing the incredible journey of hope, healing, faith and courage I've been given. But I need 6 pillows to sleep without dislocating ribs or shoulders, and my exoskeleton needs it's own suitcase. So do my dietary needs. My blood pressure drops me to the ground a few times a week, and has for a long time, often with injuries in tow. That's not going to go away because I deny the truth and refuse to use a wheelchair, cane, or crutches when I legitimately need them. I randomly need support because I can't regulate my blood pressure to stay upright. It can certainly be managed, and I can hire an assistant. But what if, at the end of the day, I don't want to go to the trouble, or risk the life of my children's mother? What if I choose safe, because it includes more secure promises of holding grand babies and growing old with my sweetheart? What if I decide I don't want to have to ride in the wheelchair in a strange city, or pay the insane baggage fees "just in case" I need the chair on the way home? And just in case what I want for my speaking career is possible, I'm going to keep reaching, and remembering.
Courage comes in many packages. Sometimes the package is in relaxing and using energy on what matters most. Missing the important stuff because I used all of my energy on other things is getting old. Courage can mean facing down and conquering the wheel chair by learning to walk again. That's freaking awesome! But the other side of courage might look a little different. It might look like learning to feel like myself inside the stupid chair, without letting it change me. Courage might mean delivering the speech, or teaching the class, or keeping my coaching appointments anyway, even if I feel uncomfortable with whatever combination of my braces I need to stand that day.
...or like letting go of Harvard, even if it could really happen. How am I going to spend 1-3 semesters in Maryland without my doctors, family, and support system? It breaks my heart, but I can't do that to myself or my kids. They are my world. Harvard is going to have to wait, or move along without me. Probably the later because I'm not getting any younger. But first I'm going to sit here and cry over my key board. This sucks. Really, really sucks.
Harvard will not give me more worth. No one gains worth like that, we only think they do. That doesn't mean it doesn't sound awesome, and I won't tell my grand-kids about the dream, the email, and why I chose what I did: not to worry about applying.
And...I can get graduate certificates from them online. I can take the best freaking care of myself possible, so I can meet my family's needs as long and as much as possible myself, without causing further harm to my body. I can be here when my loves get home from work and school, even if it means not getting to take that neuroscience class I pushed graduation off for. And I can be really, really sad about some of it, while cherishing the rest. No moment a mother spends loving her child is ever cowardice. It is authenticity. Authentic is a wonderful, noble, and courageous place to live.
So there it is. The other side of courage is beautiful. It is rich, authentic, peaceful, calm, and most of all, it is wrapped in love, tied up in ribbons of faith. It doesn't look the same for everyone. For some, it is the opposite action for the same challenge. Sure, I'll do my part to push off wheelchair permanency for as long as possible, maybe even the rest of my life. But if I can't, I'm going to have already worked through many of the emotions, so I can sit down and enjoy the ride. I can't undo what my body is doing, nor do I have to like it. But I can be the eye of the storm anyway. There will be days in my chair. It is a pretty chair. My value doesn't change if someone else thinks I'm giving up. I can't say that enough, because it hasn't sunk in yet. That part is still coming.
Authenticity, patience, acceptance, and Love. That is where I choose to live, everyday. If ore and more days are spent in a wheelchair, reassuring my friends and colleagues I'm really OK, so be it. Every now and then, I won't really be OK. That is alright, too. We'll manage.
This Spirit of mine is full of all sorts of spunk, fortitude and tenacity. My gifts come from God. Challenges and awareness are are gifts. I'm worried some days, angry for moments, and feel hopeless now and then. Those feelings pass. My courage to live life fully, no matter what challenges come though? That won't change. That is something I can count on, and a legacy I want to leave my kids with. Harvard can't give them that. But I can.
Believe in you, with or without whatever "chair" you might face in life. Courage is in the movement through it, even if someone else moves differently.
Wishing you many spoons on your path.
-Lacy B
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