I cannot tell you the number of times over these years that I have heard the words, "I wish I had cancer, that would be better than IC."
It seems natural to wish that what was happening in one's body-wasn't. But, the old saying, "be careful what you wish for", is something that I think is wise advice. In many of the cases where people made comments like that, they then faced other things that felt even more humbling and debilitating making the IC pale in comparison.
Why am I saying all of this? I think the reason is because, yesterday someone asked me about my faith in God, and my belief in the argument that things happen for a reason. For those that know me, you know that I have a very strong spiritual side, but, at the same time, my treatments are based strongly in medicine-and have nothing to do with my spiritual beliefs. Yet, how can one separate the human spirit from the human body? That is a question that has been contended with from the beginning of time and will be argued until long after I am no longer here, that is for certain.
However, I do think that interjecting human spirit along the struggle toward health is relevant. It is relevant in that there is a plethora of emotional struggle that goes on in this. And, one does have to ask question such as why, etc....
Btu, as one asks those questions, it does seems that perspective can be lost in the suffering. What I mean is that, as suffering reduces and health improves, often, I notice that a person may continue to focus on the symptoms that are there instead of the ones that have disappeared or are disappearing.
I was speaking to a patient whom I adore yesterday, and all of this came to my mind. Because she has been through so much and come so far, yet, she is focused only on the small amount of symptoms she has lingering-and, none of them have to do with her bladder. The very thing that she wished to replace with cancer only three years ago.
This struck me, especially this week as another unrelated story has been shared with me of a mother of a 7 year old at my daughter's school is fighting for her life for the second time in her struggle against her brain tumor.
Although this woman's path has been heart wrenching and difficult with brain surgery, chemotherapy, never ending trips to the doctor, MRIs, etc... no one would know that anything is wrong. She is nothing but loving and positive. Her struggle to survive, to live, to thrive is as big as her spirit and heart.
I hope my point is not coming across as judgmental toward anyone in this process. What I am trying to say is that each of us bares our own struggle. And in the face of it, we try to pick ourselves up and evolve through it and from it. But, it is so important as we do this to count our blessings each day, from the smallest to the biggest- and to remember to pay attention to all the wonderful things that have changed for the better. Any change is evidence that change is possible. And when we drink up all the little gifts in our lives-our children, our friends, our work, the flowers, the smell of the grass, the sound of the birds, the taste of water, the roof over our head that protects us from the elements, the clean food that we eat, just to name a few- we feed our bodies with the positive energy that life has given us to take in.
No matter what our problems are, they could be so much worse. If you need to remind yourself, think of all the things in life that you have not been subjected to. I do that myself when I am feeling sorry for myself. And then quickly, I snap out of it and come back to the blessed reality of my life as challenging as that has been for me.
I thank the universe for all of the wonderful things that have come my way and all of the awful things that have not. The challenges that have come, I have faced and dealt with. And, I am ever grateful for all of it, because if not for those, I would not be who I am today.
So be you and be thankful for who you are, and be strong!
Comments
Beautiful thank you for
Beautiful thank you for writing this Matia, I know this reaches home for a lot of people. I myself have thought these very thoughts about cancer. The reason is not so much that you really want cancer but i think it's more beccause cancer is more universally accepted and understood.
It's always nice to see you writing again I know your so busy I really enjoy your blogs. Thank you for this beautuful post. It really hits home.
As always...
...Matia is right!! It's all about balance. You must be aware of the pain in order to know what to contiue to work on, but you must also celebrate the improvements that you are making in order to have to strentgh to continue to fight! I don't think you can truly heal without learning to do this. It's not easy but if you practice it does get easier!
I remember
Early in treatment, I had these same feelings. I think that the feelings weren't really that I wanted cancer... but that I wanted to have something that was socially acceptable. From my perspective, I would get frustrated that people didn't either understand or accept my condition. They didn't understand how I could look "healthy" on the outside but feel sooo bad on the inside. With cancer, it seemed that there was a clear treatment and it was something that everyone understood, where as IC it was something most people had not heard of and when they did sort of understand the symptoms, they couldn't grasp what the big problem was with having to go to the bathroom more than others. Most of you know that many people think that IC and all the related symptoms are even psychosomatic. Cancer would never be called psychosomatic. It is hard to be afflicted with something that people don't understand. Heck, I can remember the old me, when I was "well". If I told my old self about all the kooky things I am afflicted with now: burning tongue, hair falling out, bruising, bloating, tightness in shoulders, sensitive gums, consitpation, diahrrea, you name it... the old me would have thought I was a nut.
To speak to the same vein that Matia wrote this post though... I believe IC was given to me as a gift. I think I was hurting my body (and I didn't even know it) I thought I was healthy, I never did drugs, smoked, no alcohol and I was MAD that I got sick. Ask me about Chinese medicine 5 years ago, and I would have told you you were a lunatic. I was given IC so that I could come to Chinese medicine to learn to slow my life down, find calm and inner peace, enjoy the good things... I still struggle with this, but I get better each day in terms of appreciating life and I also get better in terms of my health as well.
I hope this all makes sense. Thanks for the springboard Matia...
Seriously
I heart ICAMA and your blog Matia so much! I am always pleasantly amazed at the wonder of the synchronistic subjects that come up- I want to thank you and all contributing readers and writers for truly supporting and empathizing in a WHOLISTIC fashion the aspects and spectrum of avenues that IC takes you on. I soo needed this post. I think pain/IC imbalence/this treatment can be a very strong force- it can shake you up and turn your whole life upside down- It can be destructive in the most positive way- literally shaking you free from habits and thoughts and foods that harm the body-and put you on a new pathway to sustainable health. However it can also if you let it - it can also drain you of life if you focus on all the negative aspects this suffering can be. People can feel robbed - so much loss and they can feel angry for the losses they sustain. A bitterness has from time to time creapt into my life even as I improve and this bitterness is a poison. It gives me this sense of "entitlement"- this impatience to move on - this urgency to be done with it already. Yet all of the things I have suffered have been a valuable lesson- truly priceless knowledge. I dont' want to ever take this experience for granted. Pain can be like a battle fatigue after awhile and if you don't turn inward and literally change your perception when we lose focus/appreciation-let this negativity- drag us around- if I don't cultivate gratitude for the miriad blessings everywhere then I get eclipsed by that negativity. you've got to open up to these things- look at them and enjoy them and bless them and let go of bitterness and not begrudge the value of even your suffering. Take ultimate respobsibility for your life and feelings and making it good! I so so so needed to hear that post. I read a passage out of a spiritual nourishing book and I didn't understand its good advice completely until now- it reminded me that I shouldn't be standing there- demanding blessings ( more improvement) before thier time when my- cup runs over and that I haven't yet taken the time to experience or appreciatate the richness in my life right now- how much improvement I ahve experienced. That until I did - and also until I could make an offering of positivity and beauty poured from my cup selflessly to others from my cup running over that I would stagnate in a place of "impoverished mind" unable to see the gifts piled all around me and wonder why no new gifts have been added. I had not made room for this in my life yet You've got to empty the cup for it to fill up. Did that make sense? anyway it was yes- yes- focusing on the positive and blessings attracts more blessings too! Prayers for your daughters classmates mother. thanks for lighting the candlea wellspring of eternal respect and gratitude for you!Mary
Mary
This post brought tears to my eyes. Thank you for sharing it!
Perspective
I think Nicole hit the nail on the head in that cancer is more understood and accepted than IC. When people say they would rather have cancer than IC they really mean that they would rather have a disease that everyone recognizes when you tell them what you have. Others tend to sympathize more and lend support to people with diseases that are well known. We would all love to have that level of support and understanding. When you tell someone you have IC they will usually say something like 'What's that?' or "Gee you don't look sick!' and then promptly change the subject. It is tough to struggle day to day with a chronic illness that is neither understood by the conventional medical system nor accepted by society. We all should be thankful that we have this alternative option. This blog was well written and very inspirational to read. Thank you Matia, and thank you for never giving up in the struggle.
Nicole's Post
I absolutely agree and that is a sentiment that many communicate. People do not understand something so foreign as IC, when most people look well on the outside. This is one the most challenging parts of this condition.
Speaking of EXACTLY THIS
Speaking of EXACTLY THIS, check this out:
http://invisibleillnessweek.com/?p=3105
(By the way, I've posted this before but that entire website has terrific info, suggestions & support on dealing w/ invisible illnesses, and esp dealing with other people on the matter... And speaking of other people not understanding, re: dealing with comments like "But you look so good!" or "But you don't look sick," this page offers a ton of great responses, respectful but still self-honoring: http://invisibleillnessweek.com/?p=1554 )