As anyone living with a chronic illness knows, life is no easy feat. Life is not ideal. Life is hard. Life is painful. Even menial tasks become extremely taxing. Going about our lives attempting to be normal is, more often than not, excruciating.
I could go on and on boring you with details of how miserable life with an illness is. But I’m not going to. Today, I want to focus on some positive things that have come out of my illness.
Are you serious?!
Yes. I am.
I haven’t always been so positive about life with ulcerative colitis. In 2014 I reached the lowest point of my disease. There was no where to go from there but up. My disease, though it has robbed me of so many things, surprisingly, has given me many more things in return.
FRIENDS
The first thing that ulcerative colitis gave me was a huge network of friends. In March of 2014 when I was inspired to sketch out a little cartoon ninja, I joined Twitter. I reached out to others. What I found there were people like me who were living their lives day to day hoping that the pain they were experiencing wouldn’t send them to the ER. The funny thing is, I feel like I’ve known these people for years. They understood me on a level none of my real-life healthy friends could. They know what it means to be a friend… that is, they band together to support one who, for whatever reason, has fallen and doesn’t have the strength to press on. In the words of J.K. Rowling in Harry Potter and the Sorcerer’s Stone, “There are some things you can’t share without ending up liking each other, and knocking out a twelve-foot mountain troll [or evil colon in IBD’s case] is one of them.”
COMPASSION
“Our human compassion binds us the one to the other
-not in pity or patronizingly, but as human beings
who have learnt to turn our common suffering
into hope for the future.”
–Nelson Mandela
Another thing that ulcerative colitis gave me was a stronger sense compassion. Before my disease, whenever someone would get sick, I would feel bad for them, but being a healthy person, I really didn’t get it. I couldn’t wrap my head around a debilitating illness. I can’t say I didn’t care, but I had zero empathy and so I didn’t have any words of comfort or advice. I have now lived with this disease for nearly five years. I have seen the struggle of not having the strength to get out of bed. I have seen sleepless nights in the bathroom crying and throwing up from the the pain. I have seen the surgery side of the disease and dealt with the complications that come along with that. Now, I don’t just sympathize with others, I empathize with them… and there is definitely value in hearing someone say, “I’ve been there, too!”
RELATIONSHIP
I was already sick when my husband proposed to me. We had seen illness, but we didn’t realize just how deeply it was going to impact our relationship. When you utter your vows, promising to love that person for better or worse, in sickness and health… you really don’t understand the meaning until worse and sickness hits you. And it will hit you like a ton of bricks. Sadly, too many people with chronic illness have spouses who give up at the first sign of trouble. I am thankful and blessed to have a man like Dave. I remember him telling me that when we were dating, and I was first diagnosed, he told his mother he wasn’t sure if he could handle a sick girlfriend (and future wife). But he stuck it out… he was right there with me. He loved me even though I pooped my pants. He loved me during my crazy mood swings brought on by Prednisone. He loved me even when he had to clean up my vomit. He loved me even though I developed a grotesque abscess in my incision site. He loves me, disease, scars and all. These trials made us grow closer.
DISCOVERY
I also discovered something I didn’t know about myself – I am stronger than I thought. I have been broken and beaten down by a disease that could have killed me. But I continued to fight and learned that I am tougher. I am stronger. I do not give up easily. I am determined not to let this vicious disease get the best of me… though I admit, it does get difficult sometimes.
SPIRITUAL GROWTH
I realize that not everyone shares my faith, so please bear with me. I have faced many trials during my life. So many hurtful and scary things that have shattered me. Nothing, however, has challenged my faith and spirituality quite like ulcerative colitis. I have spent many countless hours praying for God to heal me. Begging Him to just let me die. I got frustrated with Him and even yelled at Him many times because He didn’t heal me the way I thought He ought to. But as I struggled in the darkest nights, there was always that Still Small Voice saying, “I’m here, Amber. Do not give up.” Those days were hurtful and frustrating. At the time I was going through so much pain, I didn’t understand why a loving God would allow me to experience such despair. Looking back, however, I could see His gentle, guiding hand. When you’re in the thick of the disease, all you can see is the suffering… but every now and then, something good happens. Something unexpected. It may be small compared to your suffering, but if you keep your eyes and heart open, you will find little things here and there and once you finally get to a place of being “ok,” you can look back on that valley you were in. You can see the “big picture” of how things pulled together and started making sense.
Right here, as I sit recounting all the ways in which I am blessed for having a disease, I can see why I went through so much pain and suffering. Without it, I wouldn’t have the amazing friends I have (you know who you are). Without it, I couldn’t possibly understand what it truly means to be compassionate. My relationship with my husband wouldn’t be as deep as it is now without the trials we faced together. And I wouldn’t have seen God’s perfect plan for my life… I would not have found what I believe to be my purpose… that is to raise awareness and to fight for those who feel too weak to continue. This Thanksgiving, I am so thankful that I have experienced ulcerative colitis.
And now, I leave you with one last thing, a poem I stumbled across several years ago…
Of Pain
Your pain is the breaking of the
shell that encloses your understanding.
Even as the stone of the fruit must break,
that its heart may stand in the sun,
so you must know pain.
And could you keep your heart in wonder at
the daily miracles of your life,
your pain would not seem less wondrous than your joy;
And you would accept the seasons of your heart,
even as you have accepted the seasons that pass over your fields.
And you would watch with serenity through the winters of your grief.
Much of your pain is self-chosen.
It is the bitter potion by which the Physician within you
heals your sick self.
Therefore trust the Physician, and drink His
remedy in silence and tranquility:
For His hand, though heavy and hard,
is guided by the tender Hand of the Unseen,
And the cup He brings, though it burn your lips,
has been fashioned of the clay which the Potter
has moistened with His own sacred tears.
