The Bridge

If you know me at all, you know that I draw inspiration from everything. I read a lot, listen to different types of music (contrary to popular belief it is not just country), I love dialogue from movies and television, I have more than 2 thousand quotes pinned on Pinterest; anything can be inspiration for me to create. Oftentimes I get an idea that won't let me be until I do something with it and this latest video is a good example of that.

I heard the song "Help You Stand" by Anthem Lights a few weeks ago and instantly knew that I needed to do a video of SMA kiddos using the song. It was a quick turnaround time to making the video although it has been sitting in Youtube purgatory for a few weeks now waiting for the perfect time to be released into the world. Most of the videos I make as part of B4SMA Productions have simple descriptions. This video does too; dedicated to newly diagnosed families. Know that you are never alone and that there is always someone who will "Help You Stand". Simple right? Except that there is really more than that to this video and while I usually keep this kind of reasoning to myself, this time my brain won't let me.

I've been an active member of the SMA community since I was twelve. That is a lot years, a lot friendships made, and a lot of lives lost. Over the years I have changed my position on a lot of the "controversial" topics of SMA care. I have gained perspective and understanding that the twelve year old version of myself could not begin to comprehend. Being a part of the community for so long has been a blessing and a curse. You would think it would get easier because the questions and choices haven't changed much in the fourteen years. Parents still question their decisions, still think that they are alone in the fight, ask me what I would do. I pretty much still have the same answers to the questions but I think over the years I have been able to find a way to be supportive of every choice because I am not a parent. Whatever decision someone else makes is okay because I know that they are the only ones who have to live with that choice (thank you Shelle for reminding me of that regularly because I tend to forget). That fact doesn't make deciding what is "right or wrong" for the individual and family any easier. I have sincerely thought about this a lot in the last few weeks because I have been entrusted as a good person to talk to for a bunch of newly diagnosed families. This is a difficult position to be in because I know that every situation is different and as much as I may want to I can't make the process of navigating SMA any easier. I have experience with a lot of aspects of SMA and if I don't I usually know someone who does but no one can make decisions for another family so the best I can do is say "this is what worked for me" and leave it at that. Lately I have had this analogy floating around in my head and I feel like I need to get it down in writing so bear with me here as it makes sense in my head but no guarantees on paper.

When you receive the diagnosis of SMA, it is kind of like coming to a bridge that spans a huge canyon. You can't even see more than a few of the slats on the bridge because it is so foggy and dark. From what you can see the bridge doesn't look very sturdy or safe and it seems deserted. You have three choices for getting across and none come with a map or GPS. Your first choice is to take a few very tentative steps forward. You look forward and the path is dark and scary so you decide to sit down and hope that the sun will burn through some of the fog. You look down and it is all darkness. You're pretty sure thousands have gone before you, never to be heard from again, and rather than risk disappearing into the void, you pitch a tent and curse the fact you didn't pick the Disney World vacation instead of this "choose your own adventure" kind of thing. You know giving up is a perfectly acceptable option because you're only going to give yourself a few days to digest what is going on and then you will continue. You're afraid to look up when you do start walking again but you sense that you are not alone. There are others taking the bridge the same way you are and you're so thankful that you're not alone. You can do this, with the others. You have two other ways to get across this bridge too. The second one is even scarier because after you have taken a few steps you feel someone behind you. They weren't there a few minutes ago and now they are pushing you across. "Wait!" you shout because the slat in front of you is broken and you're pretty sure that you are going fall through but they keep pushing and somehow neither of you fall. You know that people behind you have crossed the bridge before and some of the ones in front of you are pulling because they know it's better if you run across the bridge. They are experts and some of them have done this journey for more years than you have been alive; surely they will get you across safely. You continually look behind you unsure if you would have been able to cross that last part if it weren't for the people tugging and shoving you across. You are getting across anyway but unlike the first way of crossing you have little time to understand or enjoy the scenery because of the sense of urgency. You get across but at the end you realize that you don't really know how you got across and there is another bridge up ahead. You realize that you got across with help and this second bridge doesn't have guides so you are going to have to figure out the way across all over again and you have to do it by yourself. The guides from the previous trek are in the background and you know if you scream loud enough someone will come but you don't know how long help will take to come. You begin the journey across the second bridge and remember to pay attention on how to get across with minimal assistance because you have no other options. You also remember to enjoy the scenery because you will never cross the exact same bridge again. The third and final option is just as scary as the other two. Again the bridge seems deserted and unstable. You begin walking and, looking over the edge, get terrified. It's so dark and you can't imagine how anyone got across. You walk slowly and stop sometimes looking behind you to see if you are still alone. Maybe you should turn around and go back? This doesn't feel right. Then you feel something brush your hand. Turning you see a smiling face. They are holding out a hand and offer to walk with you. You're thinking that it isn't always a good idea to talk to strangers but you're scared and the person says that they have walked this way once before, it's easier with a friend. So you walk together. Sometimes you feel the need to sit down and rest. Sometimes your friend sits with you and points out the beauty surrounding you, noticing things you would have missed walking by yourself because you kept looking down. Other times when you sit, your friend keeps walking and you occasionally lose sight of them for awhile. There are parts of the bridge that you have to walk alone and it is scary because you think you're never going to find your way out. But somehow you find the way and when you trip, your friend appears in front of you, offering a hand or an encouraging word. You make it across in your own time and own way.
Yeah it's convoluted but it's how I feel. When I was younger I was solidly in the  second option, pushing people across the bridge because it was the only way I knew to get there. Now I am hoping that I am more of a number three. I am honored to walk with others and point out the beauty but I also have to walk away sometimes and let you stand up by yourself. I have my own bridges to cross so I can't be your everything because I have to let you find the right path for you. Maybe our paths will cross again and maybe not but please know that I am reaching out a hand to Help You Stand whenever you need it.
So if that still doesn't make any sense try reading the lyrics below and definitely watch the video.

Help You Stand | SMA Awareness

Lyrics to
"Help You Stand"by Anthem Lights

Picked up the phone again
Put it right back down
That was such a lame attempt
To try to help you out
If I said to myself I'm not scared I'd be lying
Don't know if I know what to say
But I'm trying
So I picking up the phone again

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger
But I'm reaching out my hand
I just want to help you stand
Oh oh oh
Just want to help you stand
Oh oh oh oh

The tone that's in your voice
I can recognize
The shaking from your choice
I can empathize
I'd said I had never been there I'd be lying
Jesus picked me up when I was crying
Broken down on the ground
That's why I'm calling you now

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger
But I'm reaching out my hand
I just want to help you stand
Oh oh oh oh
Just want to help you stand
Oh oh oh oh

He'll meet you where you are
He loves you where you are
He's not pointing a finger
He's just reaching out his hand
Oh oh oh oh

He'll meet you where you are
He loves you where you are
He's not pointing a finger
He's just reaching out his hand
He just wants to help you stand

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

 

I hear you fell down
I'm here to let you know
Not giving up
Not gunna let you go
I'm not judging
I'm just loving
Not pointing my finger

 But I'm reaching out my hand
I just want to help you stand
I just want to help you stand

 

 

Offering Advice

[An excerpt from a conversation on a Facebook SMA support group. For privacy purposes names have been altered.]

I hate conversations like this. I hate that someone even needs to ask questions like this. The side effects of a diagnosis of type 1 SMA are potentially devastating no matter how you approach the use of equipment and g-tubes; there are no guarantees and that, truthfully, sucks. That being said, equipment and g-tubes are a valid option and one that should be examined on an individual family basis. I would never suggest that the equipment is right for everyone but I believe it is extremely dangerous to suggest that a family continue orally feeding if the child is obviously aspirating. Whether or not it is what you would choose for yourself matters very little when a life is at risk.

In case you're wondering what makes me qualified to be discussing this, I will give a brief history on my life experience because I do have some. I am 26 years old and have SMA. What type? Probably debatable on a number of levels but my neurologist at OSU says that I am a super strong type 1. Maybe he is right and  maybe not but I am one thing for sure; me. I, some how, (I choose to say by the grace of God) survived to the age of 8 without breathing support and until 16 years old without a g-tube. I am living proof that you don't have to have those things to survive but I am also proof of how horribly things can go if you don't use them. I don't suggest that anyone, no matter the type, follow my path because it is a miracle that remains unexplained that I survived. It was difficult and I would not want anyone else to have to go through everything that I did to get to this point. I now have a g-tube, j-tube, and a trach. No one told me to make these decisions and the doctors even tried to  talk me out of them. My options at the time of trach placement were 1) live in the hospital 2) get a trach or 3) die. Perhaps my life experience should have told me to give up and die since no one agreed with my decision. But I am stubborn and refused to live a life isolated in the hospital or die.

"Carl", it is admirable that you have been able to survive without any support, it really is. However, I think that you need to be careful when doling out advice to families with small children. My old physician regularly told other families not to worry about equipment because their child was similar in strength to me so they would not require assistance for many years either. More than 5 of these children ultimately passed away because they didn't have what they needed because they were predicted to be like me. That is a lot of guilt to live with day to day even though I was not directly involved. The likelihood that there is another person in the world who is exactly like you or I is very unlikely. This is why I am always happy to share my story with anyone but I am not going to say that they will have a much better chance at life if they follow me. My journey is not typical for a type one and I am well aware of how blessed this makes me. It is reckless and dangerous for individuals who are not typical of the disease process to run around selling snake oil to people who are sincerely desperate for any kind of hope. I am so honored to be able to share my story but I have a responsibility, as do you, if you remain a part of the community, to point newly diagnosed families to people who have experience with the average path of a type 1. We can be a source of hope to families only if we are realistic and the reality is we are not the norm. I don't believe in false hope but I do believe that people can easily be misled into believing that if they ignore their child's weaknesses they will improve and be like you. The reality is that everyday children are dying in spite of their parents doing everything they can to keep them alive.  Life is tenuous for everyone but even more so for individuals with SMA. Share your story of hope but do it with respect for people who have lived differently. They have valid and important information to share as do you but no one is going to respect your opinions and experience if you blatantly disregard and disrespect everything that others do because it isn't your experience. You can be an example but not if you don't show a bit of compassion towards others. Respect in this community is earned not freely given away just because you're an adult with SMA. You need to show respect for parents by answering questions when they are posed. You can't be an example if you get offended by people asking for clarification. You may have a wealth of knowledge but it's of no use to anyone if you keep it for people you deem worthy. You're not a true type 1 and I am not either but I accept that I don't know everything. I don't claim to know what to do for the weak type 1s. I know my journey and that is all.

Dear Me

Dear Me (The grammar in this letter is completely screwy since I don't make a habit of talking to myself, especially in the third person but I will give it a go.),

Me at 13

I'm writing to you from thirteen years in the future. Since I know that math has never been your best subject, this is your twenty six year old self writing to your thirteen year old self. I regret to inform you that math doesn't become your best subject until your second quarter of college when you abruptly change majors and end up in "practical math", where you learn to balance a checkbook and make a budget. You get the only A in the class of twenty five students. No, I will not tell you to switch degree paths earlier in your college career because your original choice gives you a lifetime worth of entertaining stories to share with your friends and family. I will say, however, not to stress yourself out so much when you do decide to change majors three weeks into college; no one will be disappointed in you and you will find yourself in your second degree choice.

You are going to be sorely disappointed to learn that your life at twenty six doesn't look anything like you anticipated but please take heart in knowing that you are alive. In a few short years your ability to survive will be questioned regularly by the experts in your disease. You have already outlived your supposed expiration date by quadruple at thirteen but, brace yourself because, from a health standpoint, your life gets a thousand times harder than it is right now. Sorry, I know that statement will terrify you because you hate hospitals, surgeries and, most of all, needles, but I won't lie to you. I want you to cherish what you have now without giving away the story. You're in for a lot of battles, physical and emotional, in the coming years. I'll give a small spoiler and tell you that you will get what you want most, as far as medical care is concerned, when you are twenty. You know, the thing you begged Dad and Dr. Bach for this past summer? Yeah that; you get it and although it is a battle that you have to fight, don't worry because you, ultimately, win that one, with your wit and ability to talk a million miles an hour fully intact. Now, don't get too excited just yet. You have a lot of battles before and after that one and convincing Dad turns out to be one of the easier ones. You will be shocked to learn that you speak up for yourself with passion and are pretty convincing now that you are supposedly a grownup...you still don't feel like one at twenty six but treasure the fact that you don't always have to make decisions for yourself at thirteen. I know that right now you want to be solely responsible for your life but it's not quite as much fun as you anticipate. Slow down and enjoy letting Dad and Brenda be in charge. I know you're not going to listen to that because you are stubborn (and you still are) but I had to say it to at least to pretend to be a responsible adult.

Now you're probably thinking "well at least I will have the plan that I made with my best friend, surely that must work out". Sorry to burst that bubble too, sweetheart.  Your plan to be best friends forever, get married to brothers (preferably from the Backstreet Boys or The Moffatts), adopt a girl and boy, live in a beautiful ranch-style home next door to your current best friend is a big fat no go. No spoilers for this part of your life because I want you to make the same decisions even though they are seriously painful at the time. You will get through it, a little beaten and a lot bruised. It will hurt terribly the first time one of your so called friends says "oh! you have not died yet?". But you will learn to respond with witty lines like "I feel alive but it is quite possible I am haunting you from beyond the grave." and brush it off. You will learn that you relate better to people ten to twenty years your senior and you will find true friends, I promise. You will find acceptance in the strangest places and you will find love. It won't last long, it won't be expected or in the usual way but it will be real.

You're probably getting the impression that at thirteen you're living life at the best it is going to be and I don't want to leave you with that impression. You have a lot of difficulty ahead of you, I can't change that and quite honestly wouldn't want to. You're going to scare yourself plenty in the next few years but you will also find unbelievable joy. You have so much greatness coming your way. I know that one of your biggest concerns right now is having a purpose in life. Trust me when I say it will find you. You'll never believe how much influence you will have in the community. Be careful though because you have a lot of responsibility too and that could overwhelm you when it happens the first few times. You will get to live in your favorite state for more than six years (so far) so cherish your proximity to the ocean and authentic Italian food while you have it. Don't live life inside your game of Sims (yes, I know it's fun but it is really isolating in the long run so play with your own life in the real world sometimes please. Your vitamin D levels will thank you later on). You will be told again and again that you can't do something because of your physical limitations but you will find a way. You will go to college and be just as miserable as your 

Me at 26

classmates. Please talk to them and don't hesitate to form friendships with the ones who are willing to see past the equipment and wheelchair, they are worth it. Do me a favor and try to get and remember the name of the guy you sit behind in Bioethics because you will see him often after college and he will know your name. When you start going to a new hospital in Ohio trust Brenda's sixth sense when she says that you are really sick. Trust will remain a huge issue for you but don't stress about it too much because you will adjust and learn who is worthy of your trust...even if you end up burned a few times before you figure it out. It'll build character, supposedly. Most of all trust yourself, you're usually right and even when you're not you are learning from the experience.  You're going to be different than you're currently picturing yourself both inside and out. It's a bumpy, curving, twisting, road filled with hills and valleys but it is so worth it. Really, it is!

 

Love Yourself

PS You're going to love Miss S. even more in a few days and she will be a part of some major days in your history. It will be a scary day in American history but when she offers you a hug, accept it because she needs it as much as you do.

Passion

Passion. I've been reading some extremely passionate posts as of late that are getting to me. Since I have been unable to think about much else than the hidden agenda behind the posts I am going say something.
Passion is hugely important in any life, that is a fact. Having passion for something gives life purpose and direction. Passion is something that allows us to explain why something is important to us with conviction. That being said, forcing your passion down other peoples' throats doesn't endear you to that person any faster. I am passionate about many things but I don't believe that anyone else has to be passionate about what I am. I am totally comfortable being alone in passion and don't need validation from anyone else.
I was going to leave it at that, cryptic as it is, but I can't allow myself to let it go. Perhaps I am in the minority but I feel the need to speak for myself whether or not anyone agrees with me. I know that the words "inspiration", "hero", and recently "warrior" are irksome to many adults with disabilities. I don't resent any of these words, when used in context, of people who genuinely find my life story to be encouraging. I don't relish the responsibility associated with being an inspiration to someone but, simultaneously, I am not phobic of the title either. It is a personal choice to accept or condemn the use of these words and I have chosen to accept the term, assign it to others, and live life to the fullest no matter what. However, more than anything, I find it hurtful to say that families who have lost their children to SMA should not refer to their lost loved ones as "angels", "heroes", or "inspirations". I will not say that every family must subscribe to these titles as it is a personal and familial choice. I will say that families who choose to use any or all of these titles should not be condemned for doing so. I do consider many of the battles being fought by tiny children worthy of being referred to as heroic and inspirational. I look at the struggles faced by many of the children and find myself in awe of their strength to push through the toughest of times. Mothers and fathers who have lost their children and remain dedicated to the community and awareness are the most heroic in my eyes; my own father being one of them. SMA, whether you choose to recognize this or not, steals the lives of individuals every year and it is a reality that parents around the world have to live with. It is disheartening, to say the least, that certain individuals can't see how their statements could be extremely hurtful to those who have lost someone to SMA. I am in agreement that SMA isn't a wicked aspect of my life, I have things about myself which I have no control over and certainly can not change. It does not make me or the disease wicked...It just is... I must completely disagree that assigning titles such as "hero", "angel", or "inspiration" make someone lesser or to be ridiculed. We do not know that family's journey to using those words to describe their loved one and should not judge what we do not know.
In conclusion, I know August is a month of passion for the SMA Community geared towards awareness. Don't worry about the wording of your awareness posts if you choose to include warrior and angel in your posts. In my opinion warriors are individuals who fight battles; whether those battles are fought with the mind or with the body matters little in the long run. If you are fighting for something, anything, you are a warrior to me. Fight on