What Do You Need? What Do You Say?

I was having a difficult time coming up with how to write this post. It’s certainly not an easy one. I was then reminded of the words of an old Reba song, “What do you say in a moment like this? When you can’t find the words to tell it like it is. Just close your eyes and let your heart lead the way.”

I was once again recently reminded of a question that a woman I knew uses when she knows that someone she cares about is having a hard time. Her goal is to help instead of adding to the stress the person is already feeling. She doesn’t get in your face. She doesn’t bombard you with questions. She doesn’t ask if she can get you this or get you that. She doesn’t rattle off a list of things that she can do for you. She doesn’t assume.

She simply asks… What Do You Need?

This woman is no longer a part of my life but the lessons learned from her remain. The biggest of all is that one simple question. When she first asked me the question I stared at her unsure of what to say mostly because I’d never had that asked of me before. She barely knew me. Our paths had only crossed because of her friendship with my oldest sister. Still, she saw me struggling after my sister's death and she asked me what it was I needed, not what I wanted...what I needed.

I spent the first week of February in the hospital with yet another infection in my nub. It began as it always begins with an abscess forming deep within which was opened and allowed to drain. Unfortunately, it didn’t end there. I began to feel sick and having spent the past 12 years in this battle against infection I knew exactly what it meant. I was in need of IV antibiotics and a hospital. I spoke with my infectious disease doctor and my family and we all agreed that admitting me to the hospital was the best course of action.

I have a serious problem with IVs. I’ve spent 12 years having my veins stuck every time I turn around and having really potent medication pumped through them and throughout my body. My veins no longer accept this. You can almost hear them scream “SAVE YOURSELVES RUN FOR YOUR LIVES” when someone tries to insert a needle. A basic IV will usually, if I’m lucky, hold for about a day at the most before it fails. I’ve had 3 different ports put in my chest for IV access, which unfortunately have also become infected and were removed. The last one sent me into septic shock with a temperature of 106.2. I’ve had more PICC lines inserted into my arms than I can count and each one leaves behind scarring when it’s removed making the odds of ever getting another in place very low and the last two became infected as well.

I spent the first week of February battling IVs and midlines and sepsis and PTSD before completely breaking down and finally being discharged. We weren't sure I'd last the week. I did. I'm stubborn. There is nothing more that can be done for me at this point. The only option left would be to allow them to take the rest of my leg, which I have steadfastly refused and will never allow. It wouldn’t save me and instead put me through months of pain and misery for no real gain.

I have fought hard for 12 years. I have fought for myself and I have fought for my family and for my friends. I have a lot to live for. I have a beautiful little niece just starting out in this world. I have a toddler in my life that I adore and spend quite a bit of time with. I have both of my parents, my sisters and brothers (biological and non-biological), aunts, uncles and cousins. I have goals and dreams and wishes.

The loss of my oldest sister in 2014 complicated matters in my mind because the very idea of leaving my parents with two dead children and my sister with two dead siblings makes me physically sick. However, I know I need to stop and think of this in regards to myself and had my sister not died what decisions would I have made? Would they be the same decisions? The answer is yes. My sister’s death does not negate my feelings about letting them take the rest of my leg nor does it negate the fact that this is happening whether I want it to or not.

The thing I hate the most besides the idea of leaving my family to deal with the hell that is sure to come when my time on earth ends, is that there’s no timetable. There is no “you have 2 -6 months” or “you have 1 year.” I may very well go through several more abscesses that can be drained in an exam room before ever getting septic again or the next infection could be the last. No one knows and no one has ever known. All that is known is that there’s nothing more to be done and that I cannot continue like this.

I was dealt a horrible hand in the game of life these past 12 years and I’ve played them as well as I could. I once asked my former surgeon who once said that I do not possess a “quit gene” meaning I simply don’t know how to quit, what happens when the kid who never quits can’t do it anymore and how does that kid know she’s reached that point? His response was that I’d know in my body, heart and mind. I’ve always followed my gut and it has never steered me wrong and I, of all people, would just know.

And I do.

So why did I start this out with the basic story behind the question “what do you need?” Why did I bring that up once more and in yet another post? That’s the question I want to be asked and for the answers, when asked, to be accepted. What I need right now is for those who have supported me through all of this to continue doing just that and treating me the same way they always have.  Yes, things change with news like this and I don’t expect them not to. I simply ask that you realize that I’m still me. I’m still the same wise cracking, stubborn, goofy, black and gold bleeding Pittsburgh jagoff with a twisted sense of humor that I’ve always been. What I need is for my decisions to be respected whether you agree with them or not.

I also need to ask one favor. Please make sure the people you care about know that you care about them and know that you love them. Don’t get caught up in stupid petty arguments and don’t put off for tomorrow what needs to be done today because no one knows when tomorrow isn’t going to come.