On The Night Before My Surgery
There has been so much pain over the past five years but I know "for it is by grace [I] have been saved, through faith" (Ephesians 2:8).
The night before my surgery is here; the possibility of the end of five years of pain.
I'm thinking back to the day my freshman year of high school when I woke up with a horrific migraine; it has been intractable ever since. The road has been long and this is the fight of my life. There has been times I've lost all hope, had no strength to carry on, and times when not only my faith but my body shakes from the uncontrollable tears. I have not suffered this entire time; rather I have chosen to endure the pain in hopes of the moment tomorrow may bring.
My biggest hope is for the end of the pain; I might have the ability to live life to fullest without any disability.
Ehlers Daniels Syndrome caused the iliac vein, or main vein, in my left leg to completely collapse.
It also caused a build up of varicose veins in my pelvis, many dislocations of my joints, painful mornings of waking up with subfluxed joints, and skin that will bruise just from a bump. Exasperated, my Postural Orthostatic Tachycardia Syndrome has my heart working up to three times faster and harder than the average persons in attempt to get my blood to properly circulate. I have constant fainting spells, black outs, brain fog, and pooling of blood in my legs, including my feet. Neuropathy in my hands and in my feet. The intractable chronic migraine along with daily persistent headache have caused immense pain, temporary loss of vision, hypersensitivity to sounds/motion/smell/taste, brain fog beyond belief, slurred speech, and sensitivity to temperature.
Trembling in fear but held down by faith, I'm wondering what my life will look like after Dr. Steven Smithe puts a stent in on Thursday, May 16th.
This has the hope of my long awaited and many times attempted revival. I am waiting for the day I am able to have to have more independence from those around me; it's not that I want to get away from anyone but rather the dreams I have are big plans. Tonight though, I'm focused on going in calmly knowing my guardian angle is watching over me and that my immediate family and boyfriend will be waiting for me as I wake up. I will remained loved no matter if I improve 5% or 95%; in that fact, I have no fear.
I owe all my success this far to my parents who've gone to the ends of this earth, my little sister whose watched Endless Love with me endlessly, family who showed up, friends who are more like family, the teachers who believed in me, those who taught me to advocate, Dr. David Larsen who has never given up and always made me laugh to stop crying, the nurses who've sat in bed and consoled me, for Neuqua Valley Younglife's facetime's calls, every single prayer from all, but most importantly to those who never believed my spirit would be broken. Thank you to all of those who made my high school graduation party last summer possible after I spent the 8 days previous to the party in a comatose state in the PCU. That meant the world to me.
After May 16th, I know there will be post pain to overcome.
Believe me though, I have gone through worse and will make it through it all with the Lord's strength. My favorite biblical verse provides me with the answer that "for it is by grace [I] have been saved, through faith" (Ephesians 2:8). This faith will carry me through to much bigger things than I've lost out on over the past five years. You should see my brain turning with ideas for the massive bucket list to be laid out ahead of me.
The future is bright, there's just one more night.
Beware: Invisible Disability Causes Hazard When Taking the Stairs
The hurtful comments are heard and you look inconsiderate to those of us living with an invisible disability.
Sometimes those of us who have physical disabilities get upset when we have to be excluded from fun things such as family holiday games, keeping up pace with friends at the gym, or tolerating the heat of July mixed with the noise of fireworks on the 4th. Knowing there are some things in life you just aren't able to do, or misery will prevail if you choose to do them, really freaking sucks. At 19 years old, it makes you wonder what some of the bigger steps in life will look like. However, I do know I can't take the steps and the elevator is the safest option currently.
You might see it as laziness for not going up one flight of stairs, while I know it's saving my body from collapsing. Five years of living with a collapsed iliac leg vein, intractable migraine, daily persistent headaches, Ehlers Daniels Syndrome (EDS), neuropathy in my hands and feet, Postural Orthostatic Tachycardia Syndrome (POTS), and immense brain fog is REALLY challenging. It's not only physically draining, but mentally as well. This is especially true as a full time college student living out of state. So at the end of a long day or in the morning right after I've gotten out of bed, stairs are really dangerous.
I've missed steps and fallen forward down compete flights of stairs. The danger in that is EDS equals loose connective muscle causes for a looseness in joints; this leads for them to easily pop out of the socket. I have the vascular version so I bruise extremely easily. Simply bumping into the counter will leave a huge bruise, never mind tripping up a few steps. With POTS, I get dizzy and blackout frequently. If I'm going to fall, I'd prefer it not to be down a flight of stairs on a rough surface. I already have major issues with migraine pain; the goal is no concussions meaning not increasing chronic migraine pain.
So you can think one flight of stairs is nothing and you are able to think that. However, I guarantee that to a person with an invisible disability, stairs are everything. They are the difference between a surgery and no surgery. They are the difference between life long injuries and continuing on with our current battle. They are the difference between exasperated pain and making it where we have to be while staying at our current pain level.
Elevators are lifesavers. They are a simple solution for those of us unable to take the stairs; that's why we have first right to them. If you've never noticed, there's little signs outside most elevators stating that. On the downside, they lead to cruelty from careless strangers; the quiet comments you just can't shake. The comments are an inconsiderate method of being ignorant, while choosing to pass up a learning opportunity.
Invisible Disabilities are everywhere. Use your ability of kindness we all have to be more understanding and willing to give people the benefit of the doubt. Remember that just because you cannot see something doesn't mean it's not there or isn't happening. So beware of your gift; challenge yourself to be the one to take the stairs.