At a formerly robust, energetic, and non-stop 33 years of age, I felt despair at being trapped and with a loss of independence. I had gone from being fiercely active as abundant energy flowed through me, to being halted in my tracks...well...I could barely even make tracks any longer because I could not stand for long, at least not on my own. But, the truth was, I felt as if I had a need for independence that could not be negotiated. Doesn't everybody feel that way?
I certainly felt unstoppable, until I got stopped in my tracks, by Addison's disease.
There is a song by Tim McGraw, "Live Like You Were Dying" and the lyrics give the story of a man in his 40's after he's received bad medical news. He decides to live it up, so he went sky-diving, he went rocky mountain climbing, and he went two point seven seconds on a bull name Fumanchu.
I love this song. It sums up the burning urge you develop within yourself after medical professionals tell you that they are not so sure that you will make it. Your brain must suddenly learn to operate without the body as a partner; when the physical body fails you, you find that your brain begins to work over-time. Normally, the body would partly keep you busy...our auto-pilot for physical motions can be fascinating. But, as you are forced to lie in a hospital bed and are without your normal busy life to keep you distracted, your mind begins to expand as it never has been given the chance to do previously.
Being STILL, especially forcibly, for extended periods of time, can definitely CHANGE YOUR LIFE FOREVER.
I realize that some people become seriously ill, yet they still have the choice to do normal things for a while because their body is still cooperating. Hence the song by Tim McGraw with his main character still being able to ride a bull named Fumanchu. However, for me and for many others, an illness or sudden injury can mean that everything in your life has turned upside down and the option to sit on that bull on your own accord has passed by.
For me, I hear this song and I love it, but I think, MY GOODNESS, during my health downfall, I didn't have the choice to go skydiving, especially not with living precariously with Addison's Disease. For me and for others, finding yourself with a serious medical condition or tragic injury might not only mean that you couldn't go rocky mountain climbing, it means that the very simplistic things are unattainable. Forget the dramatic "I'm-Really-Living-Now" kind of moments, how about being so far gone that you are lying there longing to do the little things in life, the little things that had defined your very existence.
Just like the "Bucket List" demonstrates a person's deep-seated desire to "conquer the world" in their last days, a person can also have a "Bucket List" that is full of the desire to do very ordinary, common, little things. Once the ability to do those things is taken away from you, those sky-diving, rocky mountain climbing and riding the bull moments mean NOTHING because all you long to do is to be able to get to the bathroom and back by yourself or to read a book to your child or to go to the grocery store by yourself and push the cart without a thought or care as to the physical cooperation of your body.
Oh yes my friends, for some, that "Bucket List" and those moments where you "Live Like You Were Dying" might be rather humble moments that you long to have back.
During a few serious health battles, as I've had more than my fair share of being stuck in bed or in a recliner, the boring little things that I'd taken forgranted were suddenly being done by someone else, and it dug into the core of my soul that I could not do my simple "mommy" chores.
I wanted to keep being the pro-active mommy I'd always been. I purposefully had my children very young because I wanted to be THAT mom who could keep up with everything the kids did while they were being raised.
Around 1990 - I am holding Stefanie. |
I owned a successful business that brought in major money, yet allowed me to attend every school function held during school hours. I didn't miss a beat with my kids. I sacrificed and orchestrated my world around my children. I took my mommy-business very serious, and I certainly didn't want someone filling in for me in this very treasured life position. But, I had no choice because my body was so sick that I had no choice but to linger in bed until my body "recovered."
Stronger again, volunteering at a car wash for the team. I basically was a contributing photographer for the team for end-of-year publishing. |
During much of this time, I was miserable, sad and mourning the loss of being able to do these seemingly insignificant things for my daughters and for my husband. My faith in God got me through those very "alone" moments, even when people were around me, I was clearly "alone" because my condition separated me from everyone. For so long, I was sad that all of them could walk out of the room and away from the devastation while I remained stuck with it, as time ticked by, I could not escape my newfound jello body.
Even better days were to come after several huge hurdles, such as this day at a Texas A&M game as I get to play with her hair again! |
At first, we didn't know I would recover, in and out of the hospital I would go, but I began to slowly regain strength and abilities to allow me to do the sweetest, most precious things for my daughters and husband. However, a mommy is a caregiver of the most treasured things she'll ever have...her children. Regaining enough health and strength to resume some of these mommy-things had been my Live-Like-You-Were-Dying moments to savor. I didn't need a trophy, an award, or accolades; I didn't need to run a marathon or lift weights: I didn't need to jump out of an airplane...I just needed to sweep the floor and re-organize their toys and pick them up from school.
As soon as possible, often while pushing myself too far and too fast, I began to again do the things that an ordinary mommy or parent does for their child, especially after she is held back from doing them for too long. And if I hadn't LOVED doing those mundane, daily things during the years BEFORE life dictated a different way of living for me, I sure learned to LOVE them afterward.
My oldest, Heather, with me at a football game to watch her younger sister (Stefie) perform awesome, sporting dance moves at half-time. |
This is a photo of the time-frame when I was beginning to fall ill due to Addison's disease. My oldest and very tall gal is actually only about 13 years and my youngest is around 10 years old. |
She said I was in my early thirties,
with a lot of life before me,
when a moment came that stopped me on a dime.
I spent too many precious days,
in a cloudy and confused haze
while talkin about the options
and talkin about sweet time
I asked her when it sank in and
this might be the really real end
I said how's it hit ya
when you get that kinda news?
Man, what'd ya do?
and she said,
I missed mommy things,
To listen to my daughters sing,
I longed to make my child's school lunch,
To simply hug both kids a bunch,
And I pulled my kids closer,
Longed to be the mommy-boaster,
And to do normal things just like I used to do,
And she said some day I hope you get the chance,
to live life that's anew.
TO LIVE LIFE THAT'S ANEW!!
You write so well. Your blog has helped me realize I'm not alone and others go through what I experience everyday. I too have daughters. I've had to let them stay with their dad a lot during the week because I barely can get myself up ready for work, let alone my beautiful 3 daughters. I mourn the loss of my old self, so active and stopped dead in my tracks one day. I long to be their Mom again. Each day I feel like I lose precious time with them. I love your version of "Live like you were dying" .
ReplyDeletePeople look at us on the outside and see healthy but they have NO idea what goes on inside. Once again, thank you for sharing.
Tracy
Bless you Tracy, I pray that you become stronger. Sometimes, it's okay to just be a mommy with all the wonderful parts of you that still belong to you, even if not the same. Even if you lie in bed together watching a movie or doing something low-key, keep adjusting to your abilities and keep moving forward in spite of any decline. It's a challenge. Your girls will one day see how hard you try...it's hard when they're young, but they will definitely come to realize how hard it is to have a chronic illness.
DeleteBlessings upon you...Lana
Bless you Lana, God gave you a beautiful gift of writing, please keep it up! You encourage me and so many others that struggle with this.
ReplyDeleteThank you Tracy, you have given me the biggest compliments I could ever have. Sharing and being honest can indeed encourage others to keep going, even through the worst. Sometimes, it just helps to know we're not alone. I am so thankful to have met others, such as yourself. Get some rest and don't feel guilty about it!!! You are very worthwhile, even with Addison's or whatever it is that a person is confronted with as a challenge in life...you can be a wonderful blessing, even if you aren't able to jump rope!!! Hey, I don't think I could do that anyway!! :-)
DeleteLana