Illness, Death, and Christmas

“He puzzled and puzzled till his puzzler was sore. Then the Grinch thought of something he hadn't before. Maybe Christmas, he thought, doesn't come from a store. Maybe Christmas, perhaps, means a little bit more!”--- Dr. Seuss

Christmas is a very emotional time for everyone. It is during the holiday season that we often stop and take stock of our lives. When you or a loved one is chronically or terminally ill during this time of year the emotions run even stronger and deeper.  They run stronger and deeper yet if you’ve lost someone important and special to you.

As the happy Christmas music plays and the bright lights twinkle on houses and on the light posts on main streets you almost feel mocked. How is it possible that the physical and emotional pain of living with a chronic or terminal illness can coexist with the joy of the holidays? How is it possible that the physical and emotional pain that comes from losing a loved one and the joyous holiday spirit can coexist? Doesn’t logic suggest that one negates the other? I happen to be unfortunate enough to have had to experience all of it.

I was diagnosed with Multiple Sclerosis years ago. It’s a chronic disease. It’s progressive and it’s debilitating. I developed life-threatening infections following a routine knee surgery in 2004 that eventually resulted in the amputation of my right leg and still the infections continue. We are all too well aware that this is a battle I’m not likely to win as it continues to rage on. My oldest sister was diagnosed with brain cancer in 2014. We had two months between the day she was diagnosed and the day that it took her from us.

The holidays have always been a time of reflection for me but even more so now. I used to worry about how my family would cope if I was gone but now that worry is so much more intense. How will my parents cope when both their oldest and youngest daughters are no longer here? How will my other sister cope with it? How could the holidays ever be happy ones again? How could they not be ruined forever?

My oldest sister was a voice of reason for me and even though she’s gone, she remains that voice of reason. She must have told me a hundred times that no matter what was going on with me, no matter how sick I was or what diagnosis had been handed down, I couldn’t ruin anything for anyone especially the holidays. She’d say, “You’re here, Meg. Infection can’t ruin anything. Surgery can’t ruin anything. YOU can’t ruin anything. Remember that.” I know now that death can’t ruin anything either. She’s no longer here and we had no idea that the Christmas of 2013 would be our final one with her but we survived last Christmas and we’ll survive the Christmases to come because nothing can ruin them not even chronic illness, terminal illness, or death.

People say that I’m brave and that they don’t know how I manage to cope, especially around the holidays. They firmly believe that they couldn’t cope with it all if they were in my shoes. I firmly believe that they could if they had to and if they chose to. The truth is that it’s hard but instead of dwelling on what’s been taken or in the process of being taken from me, my family and my friends I choose to look at the benefits of it all.

Yes, as insane as it may sound there are benefits. We’ve grown closer. We’ve been forced to realize what is and what isn’t important. We’ve learned to cherish everything even more than we used to. We’ve learned who matters in our lives and who’s toxicity we have never needed and certainly don’t need now. We’ve opened our eyes to the gift that is life and just how precious and fleeting it is.

I didn’t get to choose my personal circumstances or the circumstances that my family has been given as a result; no one does. I didn’t choose to have MS enter our lives. I didn’t choose to develop the infections that ravage me now. I most certainly didn’t choose to lose my sister especially not in the way that we did. None of us chose any of these things. My other sister hates it when I say that it should have been me and not our oldest sister who passed away but I can’t help feeling that way when I’ve been beating the odds year after year and the future we all thought I’d have was destroyed years ago. I’ll never be able to understand any reason for hers to have been destroyed as well especially when it was so incredibly bright.  She was brilliant and she was meant to finish her PhD, have children, and go far. If I’d been given a choice I’d have traded places and laid down my own life so that my sister could live but I wasn’t given that choice. I was only given a choice in how I deal with it all.

Yes, others are correct in saying that I could very easily choose anger and hatred and darkness. I know that there are many who feel I have every right to choose that route and I’d be lying if I said I’d never considered it. However, I choose to see the good. I choose to see how blessed I am to have had 30 years with my sister and how blessed I am to have a second incredible big sister. I choose to see how blessed I am in my family as a whole and the people who have come into my life and become family because I’ve learned that in the end, blood only makes you relatives. It is unconditional love that makes people family. I choose to see the multitude of lessons my family has learned from our experiences and just how right Dr. Seuss was when he wrote The Grinch.

My mom has said that there won’t be as much to open this year and you can sense that she feels somewhat bad about it but there’s no need for her to. The material things don’t matter nearly as much as being surrounded by loved ones and appreciating and being thankful for every single moment of every single day that you have with them. Everyone should inherently know that but we all often take it for granted. My illnesses and my sister’s death have driven it home for me and for my family. 

Can the physical and emotional pain that comes with illness and/or death coexist with the joy of the holiday season? Yes. You just have to make the choice to let them.

Despite The Bad…I am Thankful

It’s cliché, and everyone who really knows me knows that I’m not a big fan of clichés, but several years ago I started writing annual Thanksgiving notes listing what I’m thankful for and why. I usually post it prior to or on Thanksgiving but this year I couldn’t bring myself to write it. I must have started and deleted about ten versions of my annual Thanksgiving note before deciding that maybe this was the year I’d stop doing it altogether.

My oldest sister passed away last year to brain cancer after a 2 month battle and everyone kept telling me that the first of each holiday would be the hardest and gradually they’d get easier. They wouldn’t get better and they’d never go back to what they once had been but they’d get easier. A large part of why I found my annual note hard to write this year was because it didn’t feel easier this year. It felt and continues to feel even harder. I’m sure that part of it is that my sister passed away November 2 and on November 15 we held the memorial service. Thanksgiving hit just a week or so later and we were all still reeling from the events and turmoil that began with her diagnosis on September 4^th.  My father’s brother and his wife were here with us last Thanksgiving and it didn’t seem so odd or sad or horrible. We all felt the loss of my sister, the empty chair at the table, but with my aunt and uncle here there was distraction and I also don’t think any of our minds had really had time to fully wrap themselves around the fact that my sister was gone and would never be back. This year was different.

This year it was just our parents, my other sister, and I - a family of four where a family of five used to be. I was struck hard when I realized Wednesday night that I’d been wondering when my sister would get here. The sudden realization that she wouldn’t be coming and would never come home for another holiday again slammed into me hard. Sitting at the table for Thanksgiving I couldn’t help but be very aware that there was an empty chair and that it didn’t feel like a holiday. My other sister and I got into an argument over something fairly trivial because I was in such a touchy mood and so very close to the edge. Then I remembered that despite everything that had happened and our horrendous loss I still had so much in my life to be thankful for and that’s what I should be focused on.

So what am I thankful for this year?

I am thankful to have grown up with two truly amazing older sisters who are my heroes and role models even if I was only granted 30 years with one of them.

I am thankful to the friends and family who have supported me through thick and thin and all of the ups and downs the last several years especially 2014.

I am thankful to have my aunt, uncle, and cousins back in my life, which is one of the many gifts my sister gave us in the end. Her illness and her death allowed old grudges to be put aside and for us to reconnect.

I am thankful to have a number of people in my life that may not be blood related but are my family. They are the family that I have created as I have gone through my life. They are other parents, brothers, sisters, nephews and nieces.

I am thankful to have survived a serious bout of sepsis at the end of August that was horrifically scary to everyone around me including everyone at the hospital. I’ll never forget the looks on the faces of everyone who came through who saw me seizing, saw my temperature top out at 106.2, and saw me freezing. I’ll never forget that so many of them were certain that they would leave the room and by the time they’d be able to make it back that I’d be gone. I am so thankful that I managed to survive.

I am thankful for my amazing medical team who year after year has saved my life over and over again and has never given up on me. They listen and they know that there are things I simply can no longer handle and never pressure me. They understand the hell I’ve been through medically and are proud of the fight I’ve put up but also acknowledge that it’s harder and harder.

I am thankful to still be here walking (or well…in my case…hopping and rolling) around this earth because I am acutely aware that these infections could have and probably should have killed me years ago. Life is such a precious gift even during the hardest of times that we should all cherish and never take for granted. It is not infinite the way we think it is when we are children. Life is very very finite and it is over far sooner than we think it will be.

I am thankful for the puppy who has made the last several months easier for all of us with her sweetness and energy. She’s put smiles on our faces and joy in our hearts again. She can’t fill the hole that my sister’s death left but she helps immensely especially on the days we miss her the most.

Yes, life has been hard for this family and we’ve endured a lot. I’ve had 60+ surgeries and while we do not dwell on it, we all live every day knowing that another infection could pop up at any moment or that my Multiple Sclerosis could flare up and due to my allergies there’s little I can do about it. We all live with the pain of having lost my sister and the times when we want to call her to share our excitement, ask her opinion, or give her crap over something and knowing that we’ll never do any of those things again. We also all live with the knowledge that the infections that plague me are happening more frequently and that one of these days my will and my strength won't be enough. Yes, this family has been through a lot and it would be so very easy for us to dwell on it and claim to have had nothing but bad luck in our lives but that’s not how any of us were made.  We acknowledge the bad but we concentrate on the good.

Thanksgiving was difficult this year for me but despite everything that has happened and what will no doubt happen in the future…I am thankful.

False Advertising for Multiple Sclerosis

I have seen multiple posts about the commercial for the MS drug Tecfidera but haven’t said anything about it until now. I’ve been distracted and off my game between sepsis at the end of August, the anniversary of the day my sister was diagnosed with brain cancer at the start of September, and then the anniversary of her death on the 2^nd of November. I’ve seen the commercial several times and thought a number of things that I never got around to writing down.

I just saw the commercial again and decided that because I am already on the computer that now is the perfect time to make my thoughts on this known. I was diagnosed with Multiple Sclerosis at 19 in 2003 though the doctors now believe I was 8 or 9 when my MS journey actually began. It just wasn’t thought of as a pediatric disease so no one thought to look for it. It still largely isn’t considered a pediatric disease and most primary care physicians still don’t add it to the list of possibilities when a child comes in with bizarre symptoms but I will say that it’s getting better and more kids are being diagnosed when it starts which gives them better odds for their future with the disease. As someone who has been living with it for years, I find the commercial for Tecfidera to be a terribly bad representation of life with the disease and of the drug.

The Tecfidera commercial shows a woman capable of doing pretty much anything because she takes this pill. She seems to transition very fluidly between jogging, swimming, hiking in the woods, and going to an amusement park. To look at her you’d never guess she has an incurable, progressive, and debilitating disease. I keep waiting every time I see it for the disclaimer that this is an actor portrayal and that she DOES NOT have the disease herself.

This commercial makes it appear like those of us with MS simply need to pop this little pill and we’ll be off to the races immediately with more energy than we know what to do with. This is false advertising and it is unacceptable and insulting to portray people with MS and the disease in general in this way. It gives the public, most of whom can’t really tell you much about MS to start with, the wrong impression of what it’s like for a person to actually live with MS.

I actually took Tecfidera so I know what I’m talking about when I say that it doesn’t represent the drug well. I also know several others who have or are taking this drug and no one has found it easy to start. In my experience and in the experiences of several others, for the first two weeks or so you turn into an itchy tomato every time you take it turning bright red all over and feeling almost as though you have poison ivy. That’s just the starter dose. It takes two weeks or so of suffering through that before you feel human again after taking it but there’s more to come. Once you’ve moved up to the full dose you go through those two weeks or so once again. It’s not an allergic reaction to the drug it’s simply a side effect.

I, for one, did not get the bursts of energy that the woman in the commercial seems to have nor did it get rid of all of my symptoms allowing me to leap small buildings in a single bound which is basically what the commercial is saying. No one else I know who has been on this medication has had either of those things happen either.

I can’t speak for anyone else, though I know many will agree with me, but if you’re going to make a commercial about MS or about a treatment for MS, you should do it realistically. The reality of MS is so very different from that of the way the company chose to depict it. I realize they are trying to sell their drug and make money and a depressing commercial is not the way to go but you can make a positive commercial while still being accurate.

Just my two cents on the Tecfidera commercial. Some people may take issue with it and think I’m wrong but I believe most will agree with me.

Is It Raining There Inside You

Is it raining there inside you?
It looks as if there's rain.
The way you walk -
The way you talk -
Those eyes so full of pain.

I know you're not the type to cry;
You bear all that you can -
But pain's deep trace engraves your face
And indicates a dam.

Is it raining in those walls?
Those walls of flesh and veins.
There's a thunder when you move -
That says...inside it rains.

Don't let your walls store up the rain.
Don't hold it there for years.
Open up your windowed eyes
And drip out the stormy tears.

Un-dam that bolted upstairs door.
Let the crashing waves splash out.
Let your words of pent-up turmoil flow
In whispered drips or spurted shouts.

Is it raining in your walls -
The walls that dam your pain?
Release the well,
Of life's burdens tell.
My friend, flood out your rain.


I wrote this poem several years ago when a friend was going through some hard times and have revisited it quite a lot especially during this past year. As hard as this past year has been between the medical aspects of my life, putting my trust in the hands of the wrong person, and the death of my sister I am aware that it has been raining inside of me for far longer.  It has been raining inside of me for years on end, I just refused to let myself see, feel, and accept that. I've come to recognize that we all build dams inside in an attempt to keep ourselves safe from the harm others might cause us or that life itself might cause us but that in doing so we only cause ourselves more pain and strife. There is no shame in the shedding of tears. There is no shame in acknowledging that we need help. There is no shame in allowing ourselves to be whatever we are and feel whatever we're feeling at any given moment.

There are many people for whom allowing the rain inside to flood out is a easy task. For these people it comes naturally. For others, however, allowing the rain inside to flood out feels incredibly unnatural and nearly impossible. I, myself, fall into the second category. It has never been easy for me to open up and bare my soul. I've seen a great deal of pain and hardship in my life that has not only caused me to build dams to protect myself but to continue to build them higher, stronger, and thicker. Learning to allow the rain inside of me to flood out has been a challenge and will continue to be a challenge but I am learning what we all must learn. We, as human beings, were never meant to traverse life, especially it's dark caves and steep uphill climbs, alone. We need to let others in. I'm not suggesting that you allow every person you come in contact with into your personal life and feelings but each of us has a few good friends and/or family members that we trust and love and who trust and love us. These are the people we need to allow in. We need to allow them to see beyond the good and the happiness we project to most of the world. We need to allow them into the darkest recesses of ourselves. We need to flood out our rain.

Speak Her Name

My sister Michaeleh (Mick-I-La) has been on my mind a lot of late as we approach the first anniversary of her passing November 2nd 2014 - All Souls Day. She's especially been on my mind because of the trip I just returned from to visit my brother, sister-in-law, and their beautiful baby girl Amelia. Victor and I went to high school together and though we are not blood related, we are family. Due to my health issues it has taken far too long for me to be able to make the drive to Fort Bragg where he is currently stationed but last week I did finally make the trip and met my baby niece.

Amelia is a beautiful little girl and I'm always referred to as Aunt Meg which I love. She's such an easy going baby with the sweetest smile and cooing and good taste in music. She gets very excited when daddy plays Johnny Cash, Kenny Rogers and the songs of other such older country stars. I'm so grateful to be her aunt and to be a part of her life. I won't lie, it was at times bittersweet because I know that I will never get to be Aunt Meg to the children that my sister so desperately wanted. However, I know how happy Michaeleh is for me in getting to be Amelia's aunt.

I noticed something while I was with them that I'd noticed before but couldn't quite put my finger on. They aren't afraid to say my sister's name in my presence like so many seem to be and they didn't flinch if I said her name. So many people seem to believe that saying Michaeleh's name around me will cause me pain or isn't the right thing to do. I hate that. I truly do.

Yes, when her name is said I do sometimes tear up but they are tears of happiness and of thankfulness that you've not forgotten her or what she means to me. Yes, hearing her name causes me pain but it's a good kind of pain because she is and always will be my oldest sister and while I hate the reminder that she's no longer here physically I love her and miss her and hearing her name said helps me grieve.

The message behind this blog post is simply to ask that you please say my sister's name. Do not be afraid to mention her to me or share a memory of her. In life she was my sister, my friend, my hero, my shelter from the storm and in death she remains all of those things. Being her sister is the greatest honor I have ever been given. When she died a part of me died too and the hole left in my heart will never be filled but she's with me each and every day. The honor bestowed upon me of being her little sister is one that didn't end with her passing and wasn't just for the length of HER life. It is an honor that lasts for the length of MY lifetime.

If you know someone who has lost a loved one and you are wondering whether or not you should speak that person's name around them or are worried that it will only hurt them, think again. As I said, it will hurt but not in the way that you think it will. It will hurt because they were loved in life and they are still loved in death. It is a pain that we who have lost someone prematurely are grateful to feel because it's proof to us that you love and care for us and you haven't forgotten that a significant part of our hearts is forever damaged by the loss.

To those who continue to speak Michaeleh's name to me and continue to speak of her without fear of causing me pain all I can do is say THANK YOU. Thank you for not only remembering her but remembering who she was, is and always shall be to me.

Change and Finding Yourself

One month from today will mark the one-year anniversary of the death of my oldest sister. I still can't quite believe that it happened at all let alone that we are one month from the day that it happened. The past few months have been rough for me for a variety of reasons but mostly because when I lost my sister I lost a piece of myself and I didn't quite realize just how badly it was affecting me.  I said some things and I did some things that perhaps weren’t the best to say or do but then something happened that I thought at first was the worst thing to happen in quite some time but it gave me a blessing and a wake up call.

Someone in my life who was supposed to be there for me and supposed to help me through things could no longer deal with the pain and worry that comes from watching me suffer from my illnesses and the fact that one of them will eventually take me from this world. I was pissed and hurt and out for blood. As I stated, I said some things were that were perhaps true and that did perhaps need to be said but not necessarily in quite the way that I said them. Don't mistake me, my feeling bad about some of the things I said to this person does not negate what happened or their behavior and fault in what transpired. As my sister would have said, it simply shows my personal character.

The point, however, is that I had myself a slight meltdown and I reached out to a friend I’ve know for what feels like forever and she didn’t hesitate to say “come visit” when I said I needed to get away. I drove on down and spent time with my “sister from another mister,” her husband and their two young boys (the dog and three cats as well). Time alternating between being hysterically stupid together and deeper conversations with my friend and time with two boys who call me Miss Meg and were all over me from the minute they got home from school each day to the minute they went to bed at night was the medicine I badly needed.

Someone who saw a picture said that I looked happier and more relaxed than I had in some time and I realized that yes, I was in fact happier and more relaxed. I’d been on edge so long that I hadn’t realized just how unhappy and stressed out I had become. Between looking death in the face due to sepsis and a 106 degree fever, that person in my life telling me that they couldn’t handle watching me die, the anniversary of the day my sister was diagnosed with terminal brain cancer and the looming anniversary of the day that it took her from us I had completely lost myself.

I have a habit of getting songs stuck in my head (most notably lately is "The Gambler" by Kenny Rogers thanks to those dumb commercials) and I heard a song I hadn't heard in a long time while driving home. I've always loved the lyrics and right now they really strike a chord in me and it's from the animated movie Cars. In the song Brad Paisley sings the words... 

"When you go through life so sure of where you're heading and you wind up lost and it's the best thing that could have happened. 'Cause sometimes when you lose your way it's really just as well, because you find yourself. Yeah, that's when you find yourself."

The visit with my friend and her family, though cut short due to weather, was what I needed to help begin to find myself again. 

You see, it doesn't matter how strong of a person you are or how brave people perceive you to be - trauma, pain, fear, and heartache leave scars on us - they always have and they always will and it changes us. It may be illness or a sudden catastrophic event that strikes us down or it may be the loss of someone in our lives whether by death or by them walking away from us. Whatever the cause, we are left with scars and we are left changed. 

The question becomes will it change you for the worse or will it change you for the better? That choice is yours and yours alone to make and it IS a choice. We choose how we react to the good and we choose how we react to the bad. We've all known fear and we've all known pain.

Some of us have been through seemingly worse things than others but that doesn't mean that the pain and fear someone else is feeling isn't real just because it doesn't appear to measure up to ours. Never believe that you aren't allowed to feel how you feel just because of that stupid platitude thrown at us every time we turn around: "it could always be worse." Screw that. Yes, it could always be worse but that doesn't negate whatever hell is raining down in your life at any given moment.  

Sometimes I wonder if perhaps we need to get knocked down periodically throughout our lives by people and/or events in order to truly respect this life we've been given and learn not to take so much for granted. Perhaps we need to be knocked down in order to step up and move forward and become who we were meant to be.