I know how to be the patient not how to be the sister of one

I have been sick since I was just a little girl, we just didn’t know it. It took around 10 years but I was finally diagnosed with Multiple Sclerosis in 2003. My symptoms date back to when I was just 9 or 10. Multiple Sclerosis still is not widely considered a disease that children develop. It is a chronic, progressive, debilitating disease that needs to be treated from the beginning but so many of us go years being told that we’re essentially crazy before finally a neurologist recognizes that the symptoms are real and goes hunting.

I was still fairly newly diagnosed with MS when I went for a routine arthroscopic outpatient surgery on my right knee to correct an old soccer injury. That one small surgery was the spark that ignited the fires of hell in my life. I developed a life-threatening infection in the surgical site.  After that first infection, my knee continued to re-infect no matter how many potent antibiotics were thrown at it. I was even sent to specialist who eventually amputated my leg above the knee after infection and surgery had completely destroyed it leaving me in excruciating pain every minute of the day. I’ve spent the last 10 years in the fight for my life against recurrent infections in my right leg even after the amputation. I’ve had so many surgeries that I’ve lost count.

I know how to be the patient. I know how to be the one who is fighting for her life. I know how to be the one in the hospital bed or the one feeling horrible for weeks on end. I know how to be the one pushing herself through physical therapy and I know how to be the one living with fears she can’t quite find a way to voice. It sucks that I now how to do all of these things but I’d rather it be me. I’ve held on to the severely irrational thought that if I’m the one constantly taking the medical hits that meant that my sisters wouldn’t have to learn how to be the patient. Recently it was proven just how incredibly irrational a thought that is.

I know how to be the patient. I don’t know how to be the sister of one.

My family was recently dealt a massive blow when my oldest sister, someone I love and respect and look up to and admire, was diagnosed with brain cancer. A large tumor was found and removed the very next morning.  We were all in shell shock and we still are. This is the girl with an incredible intelligence. She’s always been so sharp and brilliant and even managed to pass her PhD classes all the while a tumor was growing in her brain.

I’ve been through a lot medically and as a whole the medical world no longer scares me. I know what I’ll go through with each new infection and family and friends sometimes turn to me to help them understand medical situations in their own lives. It is a very rare thing to hear me speak the words, “I’m Scared” even in my own battle for my own life. I’m also not one to cry frequently and am very cautious about who I cry around.

The minute I got the call that my big sister had a brain tumor I felt fear.  I saw my PTSD therapist while my sister was in surgery the following day and I cried. The minute I was told the news from her first post-operative appointment and learned just how bad this cancer is I again felt fear but to an even greater amount. I again saw my PTSD therapist right after and I again cried.

This is my big sister. This is, as life frequently is, unfair. I’m the one who takes the medical hits. My sisters are supposed to be protected by that even though I know that’s an irrational thought.  I’m the one who was the troublemaker and constantly caused problems growing up. My sister never did.  She was a straight A student with an incredible work ethic that has only become more incredible as she has gotten older. This should not be happening.

I’m learning now what it’s like to be on the other side of this particular coin. I’m learning how to be the caregiver instead of the one getting care. I’m learning about the emotional rollercoaster my family and friends are constantly on when I get sick again and again. I’m learning.

I know how to be the patient. I don’t know how to be the sister of one : but I’m learning.

What Can I Do? How Can I Help?

Anyone fighting the most serious of illnesses are supposed to be heroic people. We are supposed to be the ones that everyone looks up to. We are supposed to inspire and we feel the weight of this resting heavily on our shoulders. We irrationally feel it is our duty to be exactly all of those things.

We wage medical war against illnesses that terrify most people and we are considered strong and inspirational because we refuse to give up and let them take us from this world. We are considered brave because when our latest tests come back with bad results we smile on the outside and vow to continue the fight with no doubt in our minds that we will win. We almost never fail to put on a brave face for those we love dearly.

The reality of it all is so very different but we portray that which makes everyone else feel more comfortable.

The strength we show everyone comes from our ability to endure test after test, bad news after bad news, and our willingness to endure serious pain for the chance of coming out on the other end of it healthier and better. We shed our tears in the middle of night so that others can't see our weakness.

The bravery shown is simply the tolerance that we've built up over time for those things that terrify the rest of the world. We've learned that accept that which can not be changed which isn't to say that it doesn't anger and upset us. We just know that it is what it is and dwelling on how things could and should be different gets us nowhere.

In all honesty, if someone in your life is struggling with a serious medical condition you can bet that they aren't always being 100% honest and open with you about how they're feeling. We're far too busy trying to put forth a positive attitude and be strong.

Everyone wants to know how they can help. "What can I do?" is the most commonly repeated question when a person is diagnosed with a serious medical condition of any kind. If you want the completely true response to that question please continue to read.

What can you do? You can listen. There will be times when all we need to do is vent or talk openly and truthfully about the hell that we're going through. You don't have to understand and we don't expect you to. All we need is a listening ear from time to time from someone who won't judge us for whatever it is we need to say. The flip side to that is that you can respect that we don't always want to talk about it and instead we want to be distracted from it.

You can talk to us about all of the good things that are happening in your life because we really do want to know. We may feel envious but we really are happy to hear the good news and know that things are going right in your life. Just because things have taken a sudden and abrupt detour in our lives doesn't mean that we no longer care about yours.

You can forgive us when we cross a line which WILL happen and most likely more than once. We'll say something or do something that we truly don't mean but our emotions get the best of us and because we're in pain we lash out so that we're not the only ones hurting. It's not right and it's not fair but it is the nature of the beast. We don't expect you to not be hurt but forgiving us by realizing that it's our illness speaking and not us goes a very long way.

You can talk to us like we're still the person we've always been and the friend or family member you've always known. You can ask questions like "what's up?" or "did you catch that game last night?" instead of always focusing on our illness by asking "how are you feeling?" right out of the starting gate every time you see us. We don't always want that to be the focus of every conversation we have with you. Yes, illness has and will change us in a multitude of ways but deep down we're still the person you've always known and sometimes we need your help to reach into those depths and become that person again.

Perhaps the most important thing you can do for a friend or family member facing a medical crisis is to learn from us one of the most important lessons of all. Take nothing for granted. No one knows the future and no one knows what tragedies may be in store so live each day to the fullest and realize that nothing...NOTHING...should be taken for granted. Tell the people in your life that you love them every opportunity you get. Take that risk you've been putting off taking. Do that thing you've always wanted to do.

Tomorrow is never guaranteed for any of us. Never forget that.

Borrowed Time

We have all heard the expression, "You are living on borrowed time." Of course, this means to go on living after a time in your life that should have killed you. The phrase actually goes back to the 17th century.

When I was a child I thought that life was infinite. It made perfect sense to me that I, and everyone I knew and loved, would live forever. When I was a teen I was taught that toughest of lessons that we all must learn. When I was a teenager, a child at an institute I worked at for severely disabled children passed away. My paternal grandparents passed away when I was a child but I was too young to understand it and my memories of them are few and far between. In fact, I don't remember my father's mother at all. I'd had friends who'd lost grandparents but death hadn't directly impacted me. When that child I worked with passed away I realized once and for all that there was nothing infinite about life.

When I was 20 I nearly died for the first time. If I had waited one more day to get to the doctor and have emergency surgery, the raging infection within my knee would have been fatal. When I was 25 I stood on death's doorstep again after suffering an arterial hemorrhage from my leg. When I was 27 an accidental overdose, a mistake in the hospital pharmacy sent me to the ICU. Every single infection that I've ever fought has had the opportunity to kill me. I am the very definition of someone living on borrowed time, which is a scary thing to realize. How many times can one beat the reaper before they no longer can? These are not thoughts that I often ponder but now and then they creep through. Yes, I am and have been living on borrowed time for quite awhile now...but so have you.

Life is not infinite as I once believed as a child. Life is very much finite. Life can be over before we even know it. We're all on borrowed time so seize the day. Tell your family that you love them every day. Impart pearls of wisdom to the kids in your life so that they are well prepared for their journey ahead should anything ever happen to you. Try not to raise your voice in anger too often and never raise your hand in anger no matter the situation. Allow people to have their opinions without letting it bother you. It has absolutely nothing to do with you and everything to do with them so it's not worth getting worked up about. Always give everything you do your absolute best. If you want to do something do it. Don't put it off for another day. That day may never come.

We're all living on borrowed time. Life is finite. Remember that. Embrace that. If I have learned nothing else in this fight for my life, it is to live as it tomorrow will not come because one day... it won't.

However Many Hats

Here’s something to know about me… if there is just a tiny little chance of something happening, especially if it’s medical, odds are good that it’s going to happen to me. One of the very rare side effects of the blood thinner Heparin is hair loss. Due to the enormous about of IV medication I’ve taken over the years to combat the serious infections in my right leg, I’m frequently using Heparin especially when I have a PICC line in my arm as I currently do as I wait to have a new chest port put in.

I’m going to veer to the side for a moment for those of you who are not as medically knowledgeable as I sadly happen to be. A PICC line is, by definition, a Peripherally Inserted Central Catheter. It is long, small, flexible tube that is inserted into a peripheral vein in the upper arm snakes up the vein until the catheter tip is in a large vein in the chest near the heart. It is used to obtain IV access in patients who need long term drug therapy. They are also used for patients, such as myself, whose veins have had enough of the constant IVs. At this point I swear my veins see a needles coming and you can almost hear them scream "NOOO I WON'T DO IT! I WON'T GIVE UP ANY BLOOD! I WON’T GIVE YOU ACCESS!" as they run and hide!.

I’ve lost my hair somewhere between 5-7 times over the last 10 years because of Heparin about a month ago it all fell out once again.

There’s a challenge going around social media called 100 Happy Days where you are supposed to post a picture every day of someone or something that made you happy that day. When my hair fell out I posted a status to Facebook joking that instead of 100 Happy Days I would do the However Many Hats challenge with a different hat every day until I ran out of them and I’d start with my own fairly large collection. Suddenly, people were asking for my address so that they could send me hats for this challenge and since then hats have slowly been coming in from all over including my high school. As of today, I’m on hat 26 with many more to go.

It’s been incredible to say the least. I know that so many people want to do something to help me with my health battles between my MS and my 50+ surgeries on my leg for infections and as one person said, “FINALLY! There’s something I can do for you!” Every time a new hat arrives it puts a big smile on my face and I remember that I’m truly blessed. Yes, I have a chronic, progressive, debilitating neurological disease and yes for the last 10 years I’ve been in the fight for my life against infections in my right leg that continue even after the amputation. So then how can I say that I’m blessed you might be tempted to ask?  I am blessed because I have an incredible support system of family and friends who have been there for me every step of the way. They jumped on my Hat Challenge immediately to let me know they care and they are there even if they live across the country or even in another country.  How many people can say that? I know too many seriously ill people who don’t have a support system. They don’t have the family and friends that I do and it makes me sad but it also reminds me how lucky I am for mine and to never take that for granted. Through my family and friends doing things like the Hat Challenge I know that even on my darker days I’m not alone and you have no idea how much that means. People tell me they feel helpless when it all hits the fan for me but please know that being there for me with a text, a call, an email, a comment helps me a great deal.

I love words and I’m always writing and yet I cannot find the words to fully and adequately express how much I appreciate everything that everyone has done and continues to do to try to make this medical hell a little better and brighter.

So for now I will say Thank You and even though that is just two little words they filled to the brim with my love and thanks.